very frustrated!!

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srvkissjazz
New Member


Date Joined Feb 2012
Total Posts : 3
   Posted 2/18/2012 8:51 AM (GMT -6)   
My symptoms are: feeling drunk 24/7. When I lie down at night I feel like I've had 2-3 drinks, the room spins. When I am awake I feel "off". I have trouble with my balance, I can't focus on things far away after looking at things closely. I can't read without getting nauseated. I wake up feeling like I've had 4-6 drinks, very off balance. My memory is terrible (short term) I have difficulty watching certain TV shows because the camera moves too much and it nauseates me and tires me out. My resting heart rate is around 56-60, my standing (after 5 minutes) is anywhere from 104-108. I feel exhausted after taking a shower or bath. I have lost 36 pounds since September. I've been to my PCP, had MRIs, had an LP have been told I have meniere's, vestibular migraines, etc. My hearing is super sensitive. I am overstimulated when in a place where there are many people, I have trouble focusing on everything. Being on the computer makes me nauseated and very dizzy. I was wondering if anyone with vestibular migraines feels like this. The last neurologist I saw told me that she says I have meniere's and proceeded to yell at me (my mom was present) for 15 minutes and told me I need to see a psychiatrist because there is nothing wrong with me, all testing is negative and I am being hypervigilant with trivial symptoms. I can't work as an ER RN, I can't drive. I often go to bed at 7 p.m. because I can't stand to try to work on focusing anymore, everything is moving all the time. The "world is constantly shaky". I would just like to hear from anyone else that has had similar symptoms. Or some encouragement. I am tired of physicians looking at me like I'm a whack job. I've worked all my life, I've never been ill. It is very upsetting to me to be treated so poorly. Thanks. :)

Susan578
Regular Member


Date Joined Jul 2010
Total Posts : 21
   Posted 2/20/2012 2:17 PM (GMT -6)   
I would recomend to try another neurologist. Your symptoms do not sound out of the ordinary. Some physical therapists are trained to use a cannalith on patients with meniere's disease and I hear it is quite effective.

Have you been put on any preventatives or given a rescue? I have learned if the doctor does not prescribe or change (due to side effects or ineffectiveness) such medications, you need to drop this doctor quickly. Your doctor should work with you to find the right combination of medication and answer all questions you have. If a doctor cannot take you seriously then that doctor is not going to take the effort to help you.

In the past two years I've been been to three neurologists and the latest one is taking my symptoms seriously. I wanted to cry and hug him when he said he will find a way to lessen the occurance of my symptoms. I remember when my right side went numb for the first time, two years ago. ER doctor gave me a look like I was wasting his time. I was scared because my right side went numb!

UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 2/23/2012 2:21 AM (GMT -6)   
Sorry its so long had a lot to say :-D
also i want to apologize if i repeat anything or is kind of scrambled up, my seizures make it hard to have stuff make sense and im not feeling well enough to read back through and edit at the moment so you just get it raw!


I wanted to comment because it seems we have been through some of the same stuff. I have been sick with one thing or another most of my life and it always seems that "tests" come back normal and the dr says there is nothing wrong with me and its all in my head, when i know that im sick and im not faking it and im not crazy.... so eventually a couple dr's later i seem to always come to some conclusion. Recently I have been having problems with chronic headaches and seizures as well a tachycardia(high heart rate), I had to move back home with my parents and had a total change in life style and went from being very active to on pretty much complete bed rest from my chronic headaches. I couldnt hardly stand up because of feeling light headed and the room like it was spinning, i had to keep everything very dark. First my dr figured out that I was having seizures and from an MRI found a cyst on my pituitary gland. My heart rate jumps up when i am up and moving around but is not as bad when im laying or sitting, im on a beta blocker for that and it helps a lot. I finally found a surgeon that agreed to remove my cyst. As soon as I woke up from surgery It was like my headaches were gone and the pain from the surgery was nothing compared to the headaches i had before, for the surgery they go through your nose. Now its been about 7 months since my surgery and the strong sharp headaches are gone but i still have a lot of pressure in my head and constant strong headaches, dr thinks they are from my seizures. My seizures are Partial Complex in the frontal lobe on the left side, so i just zone out and stare off into space. Like you said I have a terrible time focusing on anything and remembering things, i had to drop out of college because of it. my dr suggested starting with small amounts like read something for one minute once a day for a week then go to 5 minutes, 10 min etc... to help build up slowly focusing on something and trying to remember. It helped a little bit, I can now do some stuff online so it keeps me from being totally bored. After I had my surgery the dizziness wasnt as bad but i still have some problems. my dr said that when im sitting down before i stand up to flex my calf mussels and then my quads and stand up slowly, something about getting the blood moving, and it really seems to help with that along with increasing the amount of salt i eat. I also have found that some medicines that ive been on have made the light headed and spinning worse and then when i went off it would get better, so if your on medicine for the headaches try a different one, ive been through all the classes of headache medicine now with no luck for one reason or another and now my dr is having me try botox in two weeks. I also have lost a lot of weight since i first got sick about two years ago and i had to get a handicap seat for in my shower so i could sit down to shower, helped with the dizziness and not getting as tired. I also get really tired from showers, i can usually only shower once or twice a week and then take a nap for like an hour when i get out of the shower, once i got the seat though it helped a ton! and one last thing my general care dr did suggest that i see a therapist, not because he thought i was crazy but because he could see the toll being sick and the major life style change was taking on me. I got depression really bad and was on the highest dose of medicine i could have. so i agreed to go and ive been going for about 5 months. Its been a big life savor for me! I thought it would be stupid for something like that but just having some ideas on how to think about things and help with finding stuff that you can do and realizing that it will be a slow process really helps not make things as frustrating. I know its helped me a lot and i always feel a lot better after sessions and kind of renewed in my faith of getting better some day and just happy not to be more sick :-) also doing research online to try to find what i might have i came across something called POTS Syndrome, I have a day long appointment next week and lots of tests with a specialist doing a research study on it at the local university. Where it seems like we have some similar stuff you might want to look it up.

srvkissjazz
New Member


Date Joined Feb 2012
Total Posts : 3
   Posted 2/23/2012 7:56 AM (GMT -6)   
There is a lady in my town with POTS. She has very similar symptoms to me. When she goes into a large store she is overwhelmed with the stimuli (I have compared it to adult onset of autism) and noises are also overstimulating to her. She was diagnosed after years of being told it was maybe MS, maybe meniere's, maybe migraines, etc. She went to U of M, Cleveland, etc and they say POTS. She's doing much better being treated for POTS. I have many, many of the symptoms of POTS and am now being referred to the Cleveland Clinic by my PCP (which I am thankful for) because I can't work. When I walk and stop, I have nystagmus (eyes jerking). When I read and then stop, I have it. When I lie flat, after a few minutes I have it. That's why I'm dizzy. The world is moving because my eyes are jerking. My MRI's are all normal. They say POTS can start suddenly after a virus. This whole thing started with a labrynthitis last June, maybe that's what started it for me........ Maybe it is vestibular migraines. I just have a hard time believing that instead of getting better certain things are getting worse. My imbalance is better but I'm just adjusting to walking. Much like a chronic drunk (and every town has one) learns to walk and attempt to look not drunk. It's focusing and seeing things that bother me. It's so tiring trying to make things just stay in one spot. I'm so nauseated from just reading your post (which I appreciated a ton) because the words all started to run into each other.. Thanks for your post. I wish you the best! Don't give up. I know now more than ever that there are people out there that have things wrong with them and the medical community just blows them off if they don't know what's wrong. Leaving the people to suffer. It isn't like those doctors are doing the suffering, they don't have to live like we do. My PCP is great. Most of the specialists I've seen aren't... It's sad. Keep me posted on what you find out! I have hope after talking to that lady in my town, she's very encouraging. She was told by a specialist that she could either live with her problem or pursue it and she chose to pursue it and that's what I'm doing. I'm too young to waste my life being miserable. :)

UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 2/29/2012 5:25 PM (GMT -6)   
ya i know the feeling of reading long things. I usually highlight the letters as i read so i dont loose my spot and if i have to look away for a little to stop the spinning feeling i go back to the right spot :-)

So i went to my dr apt yesterday. The dr i saw is the head of cardio at the University of Utah and the director of the faint and fall clinic there and the POTS specialist. I talked to an MA a nurse practioner a cardio fellow and the DR. The nurse practioner was really nice and great to talk to because she has chronic fatigue syndrome and POTS, she talked about some of the stuff she went though getting diagnosed and how everyone told her she was physiological because they could never find anything and she was on lots of different meds for symptoms but it took her finding the right doctor to figure out what was wrong and treat the cause instead of symptoms and now she is almost totally better and has a normal life. I had a bunch of tests done on my heart yesterday. they did an EKG first to make sure i didnt have any arrhythmis problems with my heart and that was normal, just a fast heart rate like always. then they did a bunch of different blood pressures while i was laying down and standing up. my blood pressure dropped a lot when i stood up. they decided that i could have pots and set up a bunch of other tests for me over the next week. im on a medicine called metoprolol to help keep my heart rate down, it still stays around 110 though even when laying down. so the dr is having me go off the medicine so he can see better how my heart rate acts, which means it will get around 140. yesterday i had some blood tests done and then an ultra sound of my heart so they could make sure that there wasnt any problems with the structure of my heart and all the chambers worked how they were suppose to. the dr said another problem with the same symptoms can be if one side of the heart ends up doing all the work because the other side isnt working right, i dont remember what he called it, but ruled that one out. so now i get to give a couple days to get my meds out of my body and its gonna suck but then sunday i go in to get hooked up to a holter monitor to see exactly how my heart rate changes and he said he wants to see if it raises fast or slow when i stand. i also get to do a 24 hour urine test to check for sodium levels. then next thursday i go back in and they are going to run more blood tests then do a tilt table test and then ill meet with the dr again and he will see what he thinks. said yesterday that its probably either pots or an unknown cardio issue, dont remember exactly what he called that either. but the unknown one he said that they did all the tests and it doesnt show any other problems. so but they think its pots where even on a medicine that should control my heart rate and blood pressure it doesnt..... so im going to have a long tiring next week but hopefully something gets figured out! i never realized how much your heart could effect your body like that, i guess it took them talking about it to connect all the dots together. my heart rate started giving me problems about 4 years ago and back then they did a lot of these tests to try to find something and couldnt and the medicine helped me back then, so i guess something switched in my body between then. he also said that it weakens the immune system a ton and tires out your body even with the medicine. i guess stuff i all kind of knew and realized, just not enough that it could be the whole cause of my problem.... anyway ill let you know how it goes!

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 3/1/2012 3:05 AM (GMT -6)   
Hi UnknownIllness and srvkissjazz,

This thread caught my eye... because I saw your post in Heart/Cardiovascular about POTS, UnknownIllness. I've had POTS since 2004... it wasn't officially diagnosed until '06.... but it started during a pregnancy and never went away. I've been on these boards for several years now, but have never talked to anyone about POTS, lol.

Anyway, I can identify w/ SO many of your symptoms. The short term memory issues. Nausea. Feeling "drunk". Exhaustion to the point of collapse w/ a shower/bath. Easily overstimulated. Fainting/Falling. Severe headaches. I also have a pineal cyst. And - obviously - all the heart stuff - severe tachycardia - my resting HR is still around 100... and jumps to 120's when I stand, and 150's and above w/ any activity.

POTS is very real... It can occur when your autonomic nervous system goes haywire (look up Dysautonomia). The ANS controls so many of our bodies' functions - which is why so many things are affected w/ this condition.

However - even though it's real and causes so much havoc on our bodies - it's still poorly understood by most doctors. I have many doctors say "what?" when I say I have it.... Luckily, I had an internist who knew about it and researched it even further when dealing w/ my case. He sent all his findings to the cardiologist that I am currently seeing. The Cleveland Clinic is one of the best places in the country that deals w/ POTS. If you have the ability to go there - I would definitely encourage it....

YES, a virus or - actually - any "stress" on the body can trigger POTS. But sometimes it comes on w/ no apparent reason.

I also have other health issues, which many people w/ POTS do as well. I have CFS and Fibromyalgia; other Chronic Pain issues (back issues, migraines, carpal tunnel, etc); Hypothyroidism and on down the line.

Anyway, I realize that this post is rambling and VERY unorganized.... forgive me, it's late here, lol. Unknown, I went through everything that you are speaking of to get diagnosed - I wore a holter monitor... did the 24 hour urine.... numerous EKGs/heart ultrasounds..... on and on. All of that - combined with the Tilt Table Test (another way to diagnose POTS) - led to my diagnosis.

My treatment has been pretty intense - from meds (originally a combo of metoprolol and midodrine...) to needing IV saline numerous times a week....and on and on. I'll save all of that for another post, lol.

But please feel free to ask absolutely anything. I hate to hear of you both experiencing all of these issues and possibly being diagnosed w/ POTS.... but I think it's a good conversation to have on the board - because there may be others experiencing the same type of things - but knowing nothing about these conditions.

--Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

srvkissjazz
New Member


Date Joined Feb 2012
Total Posts : 3
   Posted 3/1/2012 9:02 AM (GMT -6)   
Thanks to both of you! I did see a cardiologist in August for a stress test (my whole problem started with a labrynthitis in the end of June) and the heart looked fine. The problems I have now with the intolerance of noise and being visually overstimulated has just gotten worse over time. I've mentioned POTS to my PCP more than once (because of the woman in my town) and they have just blown it off. I am going to Cleveland in April and am very excited. I am hoping they listen to my symptoms and can figure something out. Coincidentally I started having hypertension when this whole thing started. I have mentioned to every professional I've seen (2 ENTs, 2 neurologists, a neurotologist, a neuro-opthomologist, my PCP, etc) that I have tachycardia when standing. Not even with activity, just standing and their answer is always, "good thing you're on a beta blocker". My question is, "why?". I did a study of my own with my stethoscope. Resting heartrate 56 to 64 after standing for 5 minutes 104-114 while on atenolol. I stopped it for 3 days. Resting heartrate 64-70 after standing for 5 minutes 114-140. Showed my PCP and she finally said, "why on earth are you so orthostatic?????" The nausea while reading is really bothering me. My last visit I simulated what I'd do at work. I walked in the hall, stopped and she checked me, nystagmus. Rested. Stood up and read for 3 minutes, terrible nystagmus (of course all the words were running together by then and I was dizzy beyond belief and nauseated). Rested. Lied down, after a minute I felt dizzy (as I do when I lie down every single time), nystagmus. I don't believe that is normal..... I hope the people at CC have seen this before and can figure something out. I really need to get back to work and am tired of feeling terrible. I felt so sick after my bath last night that I went to bed at 7. I was nauseated and exhausted.
I am glad to have found other people who have some similar symptoms. The neurologist that yelled at me for 15 minutes and told me to see a psychiatrist because there was nothing wrong with me made me feel terrible and I was questioning my sanity. (my mother said she'd never heard a doctor speak to someone like that). Thank you both for making me feel like a valid person!!!! Bless you!

UnknownIllness
New Member


Date Joined Feb 2012
Total Posts : 16
   Posted 3/4/2012 10:19 PM (GMT -6)   
Thanks Tina for all the info!!!! it would be great to hear whatever you have to say on it. its really hard to find information online about it. I looked up the ANS stuff, a lot of good info there. So have you been able to live a pretty much normal life since you have gotten treatment for pots? what treatment are you on now?

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 3/11/2012 5:00 PM (GMT -6)   
what happens is very much like what people with autism describe , except it is pain that is overloading your mind , that is why you have alot of the problems you do , iwas in a car wreck so i knew it wasn t some weird disease or syndrome , something was broken , thought it was brain damage , but i have been posting to some of you on the site about what happened to me , and i am just going to paste it cause maybe it will help
just had my headaches cured last month with a cervical injection , seems that after a year and a half of constant headaches the doctor who was going to do an injection to cure a compressed nerve , looked at my mri and told me that he could cure my headaches , blah blah something about facet joints , i told him please do , and fifteen minutes later the headaches were gone and haven t come back , but i do still have occipital neuralgia , which is very evident now , thought that the neurologist was off , but turns out he was right on the money with that , actually , it turns out that all of the doctors were not really wrong , just wasn t seeing the right one , until now, anyway it is good to be drug free , hope it lasts , but you need a mri and a guy who does spinal injections to read it , because apparently no one else even knows how to spot a faulty facet joint

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 3/11/2012 5:12 PM (GMT -6)   
oh yeah alot of the feeling drunk and confused stuff went away as well , still think i am brain damaged , but maybe not as bad as i had originally thought, your brain can only handle so much information at a time before it shuts down , go to some sites about autism spectrum disorders and cervical facet syndrome , probably will sound very familiar , but i know i am not autistic , and never was until the wreck , and being in constant pain is what probably brought on the migraines, or perhaps in my case the herniated disc , occipital neuralgia and being in constant pain

anyway good luck , just giving you something else to look into i know in the beginning i would have liked to have at least known about this type of thing ,would have saved me a lot of pain and anguish

Blessedx8
Veteran Member


Date Joined Aug 2008
Total Posts : 3193
   Posted 4/2/2012 2:04 AM (GMT -6)   
Unknownillness,

I'm sorry I'm just now responding to this, lol. I run about 2 weeks behind in all areas of life... anyhow, I hope you see my response...

You are right; it's hard to find information out re: POTS. I'm connected to a couple of groups via Facebook... feel free to e-mail me if you are interested.

Re: my treatment - at my worst... I was on two medication to "sandwich" my heart where it needed to be (Midodrine and Atenolol). I had to go in for IV Saline about 3x per week. I was in bed alot. I couldn't climb a flight of stairs or walk to my car w/out my heart acting up or feeling like I was going to pass out. It was miserable.

Life works in strange ways, though... long story, but I had a "surprise" pregnancy... it was a difficult pregnancy -- but, afterwards, I was able to drop the midrodrine and, in some ways, my symptoms have made some improvement.

I still have to keep myself well-hydrated or my symptoms flare.... I have to make sure I don't "change positions" too quickly (like if I'm laying down, and get up to quick, I almost pass out). I have to keep in mind that the ANS affects SO many different parts of the body.

Even now - my resting HR is 100. With activity, I'm about 130 to 150. I see my cardiologist... he had "heard" of POTS... but, once I became his patient - he was wonderful and researched it and learned a lot. I see him tomorrow in fact.

Anyway, if you get a chance - update on how you are and if you've found anything out about what's going on w/ you. Wishing you the best --Tina
Moderator - Chronic Pain Forum

My faith and family sustain me even on my worst days... as well as my wonderful friends here at HW.

Health/Pain Issues - too many to list; feel free to ask

pc12pvf
New Member


Date Joined Apr 2012
Total Posts : 5
   Posted 4/2/2012 4:54 AM (GMT -6)   
To ALL,

I'm a migraine sufferer too, I've been the lab rat, I've bought the drugs, they didn't help, I've had my sanity questioned, I've been subjected to the frustrating diagnosis of, "I have no idea whats wrong with you, therefore you must either be at fault or crazy, maybe both." Sound familiar?

I got frustrated, when I get frustrated I take the problem apart, piece by piece. I develop non drug cures for human pain caused by the interface of a piece of hardware in aero space and military applications. I've been doing this for 35 years, I hold 23 patents, 42 more pending, I've designed 700+ devices. I'm not a doctor. I'm an "old guy", 62. I have a new device that has helped everyone who has used it, so far, 30 people. The following is a typical response. Julia is one of my staff accountants.

Hi Mike,

I had a migraine headache last Thursday and took home a "PVF" helmet that Dan let me try.

My migraines give me speckled vision, pinching head pains and make me nauseous. I don't get them often, mostly when I'm under a lot of stress, but when I do get them its hard to function. So I had to leave work early and I went straight home put the helmet on and went to bed. An hour later woke up with no headache, vision was clear and no more nausea. Amazing! Thank you!

Julia

Is anyone interested in experimenting on themselves with a device that has no known side affects, (the technology has been used in military flight helmets in excess of 20 million flight hours) it either helps or it doesn't, no risk either way. I spent my time and money (lots of both) on this to fix my own problem, now I'd like to help.

Mike
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