Complex Migraines with Neurological Effects and Migraine Associated Vertigo - treatment suggestions?

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pem13
New Member


Date Joined Feb 2014
Total Posts : 2
   Posted 2/4/2014 12:04 PM (GMT -7)   
I'm new to the forum and am hoping to find some help and inspiration from my fellow migrainites :)

I've had daily headaches (likely migraines although the auras come and go) for the past three months. It's a constant pain, sometimes throbbing and sometimes dull, but always a constant pressure. I'm displaying weakness and some numbness on my left side which led to one ER visit where I thought I'd had a stroke. MRI, CT, EEG and neck ultrasound all come back negative. Maxalt no longer works and I'm no longer allowed to be on triptans because I'm considered to be at high risk of stroke. I developed vertigo in the last few weeks. I haven't been able to identify any triggers although I also suffer from anxiety, and one of the neurologists I've seen thinks that this is all stress related. I'm working on lowering stress, but that is easier said than done.

In terms of treatment, Amitriptyline didn't work and I've been on topiramate for the last month building from 25mg to 100mg. It hasn't helped yet. I'm wondering for others for whom it worked when it started to kick in. Also, if you have any thoughts on the loss of words/feeling dumb side effects, I'd appreciate that as well. I'm already having difficulty functioning because being upright is so hard and the pressure is so great and will have to take a leave from work soon. I am essentially off caffeine (a cup of tea every other week), rarely drink (one drink once a month) and lay off the aspartame. I'm also trying to implement a light workout regime. If anyone has found any relief or has any tips, I would greatly appreciate it.

Many thanks in advance.

JungRulz
Regular Member


Date Joined Jan 2014
Total Posts : 394
   Posted 2/4/2014 4:55 PM (GMT -7)   
For many years I only had the visual symptoms, never any headaches. An Ocular Migraine occurs when the blood vessels spasm, reducing circulation to the Visual Cortex of the brain. I had mine frequently for 11 or so years, up to several times a week, each episode lasting about 45 minutes, with an occasional doubling for 90 minutes. There's a book by Doctor Oliver Sacks about the many forms of migraines, producing, if memory serves me correctly, mosaic migraines, Lilliputian migraines, and more.

/en.m.wikipedia.org/wiki/Migraine_(book)

The first medication that slowed the frequency of the migraines was Ergotrate. The pharmacist found that my use of that medication was so unusual that he wouldn't fill the prescription without speaking with the doctor. This medication drastically reduced the number of migraines.

I also tried Caffergot, it's ergotamine and caffeine. This gave me the worst ocular migraine I ever had and rather confirms the vascular spasm (contraction) principle of these migraines.

I went from Ergotrate to Inderal LA, (Long acting Propranolol), it was similar or slightly better than Ergotrate in effectiveness. But I had to take 240 mg/day.

Years later, actually concurrently with, I had seizures, and after 19 years the seizures were correctly diagnosed and treated. The interesting part is the migraines vanished upon taking Dilantin (Phenytoin) at the therapeutic level. Never expected that. My neurologist said there can, at times, be a fine line between migraines and seizures. Apparently so.

Vascular spasm wise, I also have twice lost the vision in one eye. Scary stuff. Lasted less that 7 minutes each time, had a total work-up, the conclusion is vascular spasm of the artery supplying the eye.

Last but not least, I had a Basilar Migraine at work. My eyes crossed, I was dizzy beyond belief, and I was looking for a place to fall, I was holding on to the wall inside and outside of an open door, sandwiched between my arms and I felt like consciousness was fading. I was taken to the hospital by ambulance, although I had returned to normal in less than 10 minutes, and received extensive testing there and again at when I saw my neurologist. I do not recommended this type of migraine to anyone ;-)

Be well.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 2/8/2014 9:59 AM (GMT -7)   
Purge your bodies of aspartame/phenylalanine if you consume some of the 6000+ food and drink products that contain this neurotoxin. It induces 92 symptoms, some very, very serious, migraines being #1 but also ocular changes. Most doctors will not ask you if you chew gum and breath mints daily, drink diet soda's, crystal light, eat yogurt by the gallon that contains this neurotoxin, etc.

Simply google aspartame and side effects, you'll be shocked it's in so many of our processed food products. You can't assume any food product is safe, you must read each and every single label, even something as simple as chewing gum.

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/5/2014 8:55 AM (GMT -7)   
I have been suffering for several years now, with chronic daily headache, all over stiffness and joint aches/pains, vertigo, dizziness, bad pressure headaches, left side facial numbess (slight), neck and shoulder pain, fatigue (not physical - I have physical energy, but what I call eye-tired), poor sleep, etc. Most of the time it feels like someone is bowling in my head.

Also experience the fun of the occasional ocular migraine.

I have run the gamut of treatments, the most current of which is Inderal. I am still ramping up. All MRI's, Xrays, CT scans, blood work, etc., are all normal, except my hormones. I am 50 and peri-menopausal and do have a dehiscence of the semi-circular canal, which may be causing at least some of my dizziness.

I have tried so many drugs along with Botox, Trigger Point Injections, steroids, a cervical epidural, etc. Nothing has given ANY relief. The side effects all suck and many drugs made my headaches worse.

I was getting weekly massages, acupuncture once a week, seeing a chiropractor for an atlas bone adjustment (Atlas Orthogonal). I lay on ice and meditate daily. I am gluten and artificial sweetner-free. Very little refined sugar and processed foods in my diet. No help.

My next step is an overall health/hormone overhaul by Dr. Dzugan. I am signing up today and will keep you guys posted as to my progress. It's somewhat expensive, but I need my life back. Thousands of dollars paid to the Mayo Clinic over the past few years has wielded no results except a diagnosis of migraine or occipital neuralgia and fibromyalgia and many attempts to put me on anti-depressants to hide the problem. I feel worse now than ever.

As long as there is hope...

Karen from Arizona

Post Edited (mafixit) : 3/5/2014 8:59:00 AM (GMT-7)


Mabe
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Date Joined Mar 2014
Total Posts : 12
   Posted 3/12/2014 5:14 PM (GMT -7)   
I have had ocular migraines for 25 years. about 4 years ago I added vestibular migraines to my repertoire. I am not allowed to teach (I was a Special Ed teacher for 21 years), drive, leave my bedroom and sitting room without help. (We have a long winding staircase). I have gone the neurologist medication road (none helped) and had balance rehabilitation therapy (that did help me learn to find my center, relearn what vertical feels like and how to ground myself when hit with unexpected vertigo.) I have now graduated to migraines in both eyes and both ears. I have some form and intensity of vertigo 24/7. I have to use a walker or crawl.
I have accepted the reality of this disorder, (I have devised a scoring system much like the Olympics to score my falls). But I don't know how to handle the depression that comes with it. I feel worthless and a waste of space and air. I have had suicidal ideation, although i have never acted on it. I am on 2 anti-depressants but I can't get over the feeling that I am a burden to my family and they would be better off without me. Has anyone else had these feelings? I need help to find meaning and value in my present life. Has anyone navigated these feelings and if so, please share how in the world you managed the despair of losing everything you were and everything you could do?

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/12/2014 6:49 PM (GMT -7)   
Wow, Mabe. It sounds like you just need to find the right doctor to find the REASON for your migraines, not just try to cover the pain.

I can tell you that I have been searching and trying everything that I can and then some, and as long as I have hope that there is something out there to help me, I can get out of bed.

On that note, I think I may have found at least some of the reason for some of my headaches. I am seeing a new chiropractor who is adjusting my Atlas bone at the top of my cervical spine. He uses a machine call Atlas Orthogonal - non-invasive and I do not feel a thing. The treatment takes about 10 seconds. I am in week 3 of my treatment with him and my headaches have toned down considerably. My last neurologist (supposedly tops in his field) kicked me to the curb, telling me my headaches were just to the left of what he treated, and told me to go see an osteopath and my pain management doctor for cervical injections.

Please do not give up - there is help. Maybe you should talk to Dr. Dzugan's staff? I am still in the process of setting up with them and getting ready to get my labs, but perhaps they can give you the hope you need to continue on? There is a solution to your problem. We just have to find it.

Don't give up. If one doctor doesn't help, go see another, and another, and another, until you find the right one who wants to heal you from the inside, not just cover the pain.

At the moment I take Gliacian (an herbal supplement that I just started), Magnesium Taurate - 125 mg 2x per day, my Vitamin D3 and the Atlas Adjustments. I have other issues that I hope my physiological restorative therapy will fix, including Fibromyalgia.

There is too much to do, too many things to see, a life to live. I will not give up. There is help.


Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/12/2014 8:49 PM (GMT -7)   
Thank you for taking the time to answer my post. I don't have pain unless I take a really hard fall. Then I have lots of pain and some very interesting bruises.

I have more doctors than I care to think about. My internist, along with a clinical pharmacist are the gatekeepers of the meds I have been prescribed, since I don't do well with medications in general. I have a neurologist that makes sure nothing is getting worse. I have a psychologist who tells me to stop being such a perfectionist, then tells me she is on the same journey. I also have another psychologist who is teaching a class called Living Well with a Chronic Condition. The class is more stress than anything else. I sit there and watch her alienate and shut people down. All I want to do is get up, slap her up the side of the head and say: "Shut up, sit down, listen and learn how to teach adults". I guess that is one of my problems. I have all sorts of skills that I can no longer use. I was the go-to person in the school district if anyone was having problems with a student. The district had actually obtained funding for me to get a doctorate in SpEd reading. Then I got side-lined for good.

I have been on my own since I was 17 and I managed to get all the way through grad school with no help except scholarships. I have an amazing husband and 3 wonderful children, but I am so used to taking care of them, the house and any problems that come along.

I am having a hard time switching roles. I have always been the giver, the helper, the go the second, third and fourth mile kind of person. It is extremely difficult for me to accept help. I find it incredibly hard to receive rather than give. I am 61 and for my entire life I have been the one everyone called first. It is hard to think of a way that I can serve and help my fellow man when I usually can't stand up, sometimes can't hear and if I can walk at all, walk like a drunken sailor, (although that can be rather amusing at times. I love to see the looks on peoples' faces when they see me stagger.)

I just want to find a way that I can be of value and help to other people. Right now with my present functioning or lack thereof (and I have been told it is highly unlikely that I will go into remission) I can't see any way to be of help to my fellow man, except maybe to fall on a criminal if he is is trying to get away.

I have always had a giving heart, I just can't figure out how to make use of that heart in my present condition.
That is the help I need, but I honestly don't know if anyone can help or if I have to take this journey by myself. If I have to take it by myself I am doing a lousy job of it right now.

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/17/2014 10:08 AM (GMT -7)   
Every day is a struggle for me, also. Today is particularly bad - I feel like I just don't know how much more I can take. But then I remember that I am waiting for labs, waiting for Dr. Z to look and them and start balancing me and I have a little hope. I wake up everyday thinking maybe today will be the day I am pain and anxiety free, and within an hour of waking up, I am suffering again.

This pain in my head and neck and eyes just tries to beat me into submission, but I have no choice, I have to carry on. Can't pay the bills if I am laying on the couch. And my poor husband does not deserve this burden. He feels helpless and there really is nothing he can do to help. I get 5 minutes of thinking "wow, my headache is gone" and then it comes back again.

See a Physiologist. Someone who will look at the whole you. If nothing comes up on MRI's, CT Scans, labs, etc., then you need to look at hormonal issues, chemical issues, etc.

My hormones are very unbalanced (I am peri-menopausal) and I am deficient in some crucial vitamins and minerals. I am hoping that by treating these imbalances, I will get 50% of my life back. I really think the only thing keeping me going forward now is the daily meditation, work responsibilities and a half-way decent diet. I stopped my birth control pills a couple of years ago and crashed and burned after that, so I think my body is in a state of "what the hell do I do now?"

Keep on trucking, Mabe. Don't stop looking for a reason. It's there. Contact me via email if you want more information on hormonal imbalance. I will keep posting as to my progress with my physiological doctor.

Karen from Arizona

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 3/17/2014 12:44 PM (GMT -7)   
Mabe - how successful have you been purging aspartame/phenylalanine from your system? As I stated several posts above google the connection between migraines and this "artificial sweetener", is a neurotoxin.

It now takes me 90 minutes to grocery shop because I read each and every label making sure I am not innocently ingesting aspartame.

I no longer have headaches - first time in 42 years.

Post Edited (Marsky) : 3/18/2014 5:52:00 PM (GMT-6)


mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/17/2014 2:09 PM (GMT -7)   
Hi Marksy!

Boy do I wish it was that easy for me! No artificial sweeteners, no gluten, etc. It seems the more I remove the worse I feel :-)

Of course I have heard firsthand of someone having so severe a reaction to gluten that it imitated MS or symptoms similar to Mabe.

Mabe, have you tried going gluten free?

Karen from Arizona

Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/18/2014 1:07 PM (GMT -7)   
Yes I have had MRIs, CAT scans, hours and hours of tests designed to make you as sick as posssible. The diagnosis from the neurologist, the physical therapist expert on vestibular disorders, my internist and a psychologist who specializes in balancing medications, vitamins and all that other good stuff have all been the same: MAV. Migraine associated vertigo. I have ocular (eyes) and vestibular (ears) migraines without pain. The only pain I have is when I fall, and I took 2 spectacular ones this morning. I don't use artificial sweeteners and I don't eat anything with gluten. I don't have Celiacs but I do have gluten sensitivity. I have found one thing that just might help the anxiety, depression, etc. Having been a school teacher for over 20 years I did what teachers do: I started looking for books. I ordered 8 books from various places. Some didn't help at all, one was so poorly written that I found myself doing proof reading symbols all through the book. I haven't read all of them yet, but one is amazing. It is called Beyond Rage. It traces the journey of a psychotherapist and some of her patients' stories about chronic illness and the emotions when losing function and self-worth. It might be out of print. I bought mine from a used book store through Amazon. Here's hoping I can actually integrate some of her suggestions. Thank you all for answering my post. All sufferers are in my prayers, but especially those that deal with almost unrelenting pain. Mabe

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/18/2014 3:28 PM (GMT -7)   
Mabe, I was diagnosed with MAV also, but now they have changed it to Cervicogenic Headaches. I now have an appointment with my pain specialist for facet injections and an osteopath for myofascial release. I am on Day 3 of a horrid headache. I have Fioricet in my hand but am scared to take it.

Have you ever been checked for SCDS (superior canal dehiscence syndrome)?

I have that, without all the horrible symptoms others have. It came up in a CT Scan for my sinuses. It's rare, but its out there.

Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/18/2014 8:04 PM (GMT -7)   
I can ask my internist for a referral for a work up. I have already had lots of CAT scans and lots of X-rays. 2 CAT scans and 3 X-ray sinus work ups.I do have arthritis in my cervical spine.....3 discs are AWOL and three vertebra are collapsed and one is calcified out of line. I had a wonderful physical therapist and after 12 sessions I was free of one type of headache that I'd had for 36 years. I was practicing the piano 5 hours a day, thinking about being a concert pianist. Apparently holding my head the way I do to play I started the arthritis at 16 and the headaches started at 18.
I have no problems in asking for more tests......except MRIs. The only way they will get my head in a metal box bolted to the table is to be unconscious!

Don't be afraid to take your pain meds. Just make sure that someone who loves you is there to monitor your reaction to the new meds.

Good luck and my thoughts and prayers are with you.

Mabe

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/18/2014 9:29 PM (GMT -7)   
Pem 13. The visual aura has lessened enough that I could read your post. Amitriptyline didn't work for me either. It could very well be that your meds are causing the word retrieval and " dumbing down" problems. I had horrible side effects with topiramate and I lost half of my vocabulary and half of my IQ with propranolol. Call your doctor's office and ask if there is another med in the same class that you could take instead. Topiramate is a seizure med.
I have found that a hot cup of herbal tea really helps when I feel anxiety coming. My balance rehabilitation therapist told me to quit fighting so hard. It was making everything worse. Easier said than done. The herbal tea starts with relaxing my jaw and throat and just smooths its way down my body. Nothing in herbal tea that you can't have as often as you want. It's inexpensive and easy to find. It's usually found by the regular tea. Try it (my favorite is apple cinnamon spice). The only side effect will be that it doesn't help, but you might just discover a way to have a relaxing 5 minutes.
Good luck

Mabe

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/19/2014 5:27 AM (GMT -7)   
Mabe said...
I can ask my internist for a referral for a work up. I have already had lots of CAT scans and lots of X-rays. 2 CAT scans and 3 X-ray sinus work ups.


Mabe


Just know that they have to LOOK for the SCDS. If they are not looking, they may not see it.

I tried the Fioricet last night and all it did was make me tired with a headache. I see my primary care doc today, along with my chiropractor.

Then next week I see an Osteopath and my pain specialist to talk about either occipital nerve blocks and/or facet injections to see if either helps.

I can't take this much more. My anxiety level is through the roof, even with meditation and breathing exercises. I do some form of upper body strengthening and Yoga every day. It seems like the more I do, the worse the headache.

Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/19/2014 11:10 AM (GMT -7)   
I am so sorry. I hate anxiety. I have found something that works for me for the nameless cloud of dread that hangs over you. I lay back in a recliner, put in my iPod ear buds or ear phones depending on how my ears feel. I cover my eyes so no light can get to them. I turn on the iPod and hold a jar of highly scented hand cream (Bath and Body Works is a great place to get them) right under my nose and breathe slowly and deeply, trying to think of nothing but the music, the scent and how my diaphragm feels when I am pulling air clear to the bottom of my lungs. Make sure the music is something you like. I have 3 iPods: one with classical music, one with 60's music (I can't help it, it's my generation) and one with Christmas songs. I am actually listening to the Christmas songs right now. Sometimes it takes five minutes before the anxiety goes away, sometimes it takes an hour. The sooner you start calming things down the easier it is. Try to begin the relaxation as soon as you have a hint of anxiety.

Good luck with your doctor (isn't it wearying to trudge around to so many doctors!) I'm keeping my fingers crossed that this strategy helps.


Mabe

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/20/2014 5:27 PM (GMT -7)   
Mafixit
I was rereading all the posts. You were really suffering, especially with anxiety yesterday. Just checking in to see if anything is better today?
Thinking about you

Mabe

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/21/2014 5:29 AM (GMT -7)   
Hi Mabe,

My headache was just to bad for me to deal with yesterday, so I called my Mayo Clinic Neurologist and she sent me to the Mayo Hospital for 3 day outpatient IV treatment. I started last night - it takes about 3 hours and I get a cocktail of Ativan, Magnesium, Benedryl and something else to stop this cycle.

I am tired this morning, and my headache level is down to a 2, but feels like it could fire right back up. I go again tonight and tomorrow night, so I will be slightly sedated for the next couple of days.

Still anxious today, but just not as bad. Thanks for thinking of me! I will keep posting on my progress. Next week I get my labs and then hopefully in a couple of weeks I will be firmly mired in my Dzugan program and feeling better.

Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/21/2014 8:19 PM (GMT -7)   
Hi Mafixit
I'm glad you got a little relief, but what a way to go: an IV for three days. Be sure to ask your doctor about symptoms when quitting the drug, you may have no reaction, but you may go down the rabbit hole.

I was complaining about too many doctors so guess what: I just picked up 2 more. I have given up sleep for about a year now, I am lucky to get 5-6 hours per night. Usually it's 1 to 3 hours per night. Now I am really dingy with a capital D The vestibular people told me I needed 9-10 to overcome the extra work my brain has to do to stay upright.

So, I now have a sleep doctor, a sleep therapist along with the usual:
an internist, a neurologist and a psychologist. It you count the dentist and eye doctor, basically I'm spend my whole life to-ing and fro-ing from doctors offices.

Good luck with your IV treatment. Keep me posted. My prayers and thoughts are with you. Be as well as you possibly can.

Mabe

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/22/2014 7:03 AM (GMT -7)   
Hi Mabe.

Round 2 was last night. The headache was coming back as I was walking in the door. I slept for 10 hours - the longest I have ever slept since I can remember.

Back tonight for Round 3. I am getting Ativan, Toridal, Benedryl and Reglan. I believe I am having a shaking reaction to the Reglan. I had the same problem with Phenergan. I will talk to them about it tonight. I am very shakey today.

The 1st night they pushed a bunch of magnesium. Last night they did not. Funny, I was in my other neurologist's office last month with a bad headache and asked for a shot of Toridal. He said I had already had it three times in the past year and they don't like to give it that often, yet Mayo is filling me up with it over a 3 day period.

Monday I add an Osteopath to my arsenal of doctors and Wednesday I get my extensive labs done for Dr. Dzugan. Hopefully this headache will stay down enough until I get my labs back and get on the Dzugan program.

Karen from Arizona

Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/22/2014 9:02 AM (GMT -7)   
Hi Mafixit
I am apparently doing something wrong. I can only read half of your post and then not on this thread but on only your posts (the first part of each). So until I can think coherently I will just answer the first half. It ended with: round 3. I am.....

I'm glad you got to sleep. Apparently it's good for migrainers to sleep. (not that I would know: I would say I've given up sleep for Lent but I'm not Catholic. Can I give it up for Lent anyway?)

I can't imagine how horrible it must be to have constant unrelenting pain. I just have constant vertigo with all its wonderful side effects. I call myself a dizzy blonde without the hassle of dying my hair. I deal more with the depression of not being able to do anything. The sleep doc I saw yesterday said I couldn't sleep because I wasn't doing anything and gave me all sorts of ideas like being an on-line professor for one of these on-line colleges and universities. Great, but how do I go about it and the trickiest part is: If I earn any money I lose my disability insurance and then we lose our house. Just what I want: vertigo, anxiety, depression and no house. Sounds like a great combination to me.

I don't know what exactly to say or how to comfort you: hang in there, or keep on trying seems so trite with a horrible pain like you are experiencing. All I can say is I am thinking and praying for you (and I have lots of time for both)

Mabe
(hopefully I will eventually figure out how to read your whole post because it's not showing up for me on this thread or any other and I would like to read your whole post)

Post Edited (Mabe) : 3/22/2014 10:16:48 AM (GMT-6)


mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/23/2014 5:42 AM (GMT -7)   
Hi Mabe,

I appreciate your prayers. I need all I can get. I understand your concern with income and disability insurance. I have a disability policy, but it doesn't kick in for 90 days. I work at home and most days I can do my job. My company is very understanding and I have no one looking over my shoulder, so as long as I get my job done, they don't care when I do it. I could not afford to be on disability or even wait for it to kick in. Too many bills right now. We are working on getting our debt down as best as we can. I still support my college-age daughter to some degree, so one she gets out on her own, things will ease up. I just can't let her struggle right now - she is working so hard at getting her masters while working full time - and I am so proud of her, that I will foot some of the burden no matter what.

I did round 3 last night at Mayo. The doc says it should reduce the severity and intensity of the headaches over time. It was a cocktail of Benedryl, Ativan, Reglan and Toridal.

Tomorrow I see my new Osteopath, Wednesday I get my labs and Friday (or maybe sooner I see my pain specialist to talk about maybe trying occipital nerve blocks. I am anxious to see what the Osteopath says tomorrow. I will keep you posted.

Karen from Arizona

Banburycross
New Member


Date Joined Mar 2014
Total Posts : 2
   Posted 3/30/2014 7:17 AM (GMT -7)   
Looking to help and find inspiration as well.

Recently diagnosed with vestibular/silent migraines after suffering for thirty yrs. several misdiagnosis agh! Passed out driving in 2012 -ouch!
So.. Tremors, syncope, jerks/twitches, mental confusion, inability to find correct words/aphasia, vertigo(atypical), wicked ice cold chills, low body temp, neuropathy spine legs n hands. Left side weakness. Drugs typically make things worse

Topamax I started at 25 mg.. It did not help until I reached about 200 mg indeed I'm supposed to take 300 but I think I took too much too soon. It only really helped me to think clearly. I'm currently on 150 trying to look /supplement more natural approach.

Migrelief: purportedly works for all migraine types (magnesium, feverfew, b2)

Sleep issues: magnesium! Melatonin (I use 1-1.5)

Always stay well hydrated, watch salt n sugar (keep it low)

Acupuncture. I've had for 3 yrs and owe my quality of life to her. I was treated (chemo) for lymphoma in 2010 which in short fried my brain n body (my opinion) I refused further chemo.

12/2013 vestibular rehab successfully diagnosed me and recommended
Topamax. Did nothing for vertigo. Now I know foods n triggers etc..

Osteopathic treatment. Not all osteos are the same.. Chiros did not help in fall of 2013. Now that I know correct diagnosis osteo adjustment fixed my syncope.. Now working on other neuro prob.

I study "mindfulness" or rather tibetan buddhism -meditation. Lama does not care if you take refuge in Jesus or buddha or hello kitty .. Breathe in suffering exhale peace. When attack coming on I've been advised to breathe (think) for all those suffering with this condition and I exhale peace to you all. (It helps bring some purpose to my life) I use to be a p/t classical pianist (played at the ritz) I play on occasion at hospital particularly if someone is passing away (helps them go in peace)
I act on occasion at local community theatre I get really cool roles.. Keeps my spirits up

Juicing helps me.. Greens green apples carrot going to add more celery

Downside.. No friends nor family to speak of.. They just think I'm nuts..but opinions are just opinions.. I've people that want me to out.. That's the prob.. Exercise! Malls! Ice cream! Etc etc.. Silent migraines excuse my language sucks! My last neuros told me e/t and to drink alcohol -I throw up alcohol! (Except wine n vodka)I celebrated my diagnosis this dec with 2 flutes if champagne oops.. Throw up from midnight til 7am... Cheers to all!

mafixit
Regular Member


Date Joined Nov 2011
Total Posts : 20
   Posted 3/30/2014 2:12 PM (GMT -7)   
Went to see the pain specialist last week. He hit the sub occipital nerves with the injections and poof! headache was gone. Some of it came back after the lidocaine wore off. Now I just have bad pressure.

Saw my neurologist. I am going to try Antenolol. Also ordered the Cefaly device, which was just approved by the FDA on March 11th. You can only order it from Canada right now. I ordered it for $300. Small price to pay if it works. Neuro said of 12 patients she has who tried it, 1 said it was a "miracle", two said they could not take the way it felt when they used it and 8 said it was working.

I have my 2nd appointment with my Osteopath this week also.

I'll let you know how it works for me.

In two weeks I will be starting my BHRT and restorative therapy with Dr. Z.

The setback I had this weekend is my hubby and I picked up a bad case of the stomach flu - Emergency Room bad, so my headache is back now from this flu and won't go away.

Karen from Arizona

Post Edited (mafixit) : 3/31/2014 6:27:30 AM (GMT-6)


Mabe
New Member


Date Joined Mar 2014
Total Posts : 12
   Posted 3/30/2014 7:17 PM (GMT -7)   
Hi Mafixit!

Sounds like you have been through the ringer. Just as you think something is working you get hit with something else. I had several rough weeks, but nothing like yours!

Hang in there, the way you are researching every angle you're bound to find something that will help for more than a few days. It makes me grateful my ocular and vestibular migraines only bring vertigo, anxiety, depression, nausea and falling. I'm grateful I don't have to endure pain like you have along with everything else!

Like always my thoughts and prayers
Mabe

Great news about your daughter.......our son is living at home, working full time and getting his MBA and CPA. Thank goodness both of our daughters have Masters plus post graduate

I got back at the sleep doc who told me I couldn't sleep because I didn't do anything. I was sent a survey. Usually I like to be kind, but this time I told it like it is. It felt good!

Post Edited (Mabe) : 3/30/2014 8:42:38 PM (GMT-6)

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