Suicidal Thoughts and Hemiplegic MIgraines

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HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 7/21/2010 6:14 PM (GMT -6)   
There was a previous thread about hemiplegic migraines and suicidal thoughts and I posted there giving words of encouragement and advice. But now I find I need some help myself. I been feeling really down lately and have had increasing depressed/suicidal feelings and thoughts. My family and friends are not that supportive and there is only one person I can rely on. I rely on him so much to the point where I feel so guilty about it. I am really bummed. I have had more medication added to my regimen and nothing is working. I have gained weight because of these medications but it is hard to exercise because I am so symptomatic. I cant work and I don't know if I will ever be able to again, my career is most likely over. I can't go out and have fun. I can't be young. I can't be free and I want to be. I'm beginning to feel like if this is how I am going to be living the rest of my life then what's the point.... I feel like all the dreams I had for myself i.e children, marriage, etc. are ruined

Please any help offered, any kind words will be appreciated. I'll be forever grateful. I don't have anyone in my life who can say I know what you're going through with regards to these hemiplegic migraines and it's so hard.

Mariposita
New Member


Date Joined Jul 2010
Total Posts : 16
   Posted 7/21/2010 10:51 PM (GMT -6)   
I am pretty sure I know what you are feeling as I too am going through very similar circumstances. One thing that has helped me though is prayer. It may not be for everyone, but after 4 weeks of extreme facial pain, Morphine injections, steroids, Vicodin, Topamax, and now Lyrica, since I finally got on my knees and started asking God for some help and mercy, my headache stopped. I had pressure at the temples still so I went to the chiropractor, since I read, migraines are often from bad backs, and yesterday after 1 session, the pressure too disappeared! Today's session was different, I have a slight headache but I keep praying and I have yet to take a pill for it - it has not progressed in the last 4 hours. Please know that you are not alone. We all have a purpose on this Earth. Check with your doctor about your negative thoughts as those can be from certain medications. I had those thoughts too and the doctor took me off of the Topamax and they are gone for now. Let's see how it goes on the Lyrica. And yes, I too am gaining weight again. I had lost 35 lbs but the Lyrica makes me very hungry. My husband is supportive though and reminds to eat when hungry just try to make good choices. Your dreams for a bright future can and will come to fruition, just hang in there as this gray peroid too shall pass. Take it one day at a time. People can look at us as though we are crazy, but we are not. We are only in pain but our brains are still ok. Well, sometimes mine does have the occassional brain fart - I sometimes forget where I am going when I am driving to work. How convenient, that it only happens when I go to work huh? Well, again, you hang in there. Always check with your doctor for medical advice, but also think about the doctor of all doctors - the one who works thorough the men and women of science, God.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 7/23/2010 5:20 PM (GMT -6)   
Thanks so much for replying and for all your positive words and well wishes Mariposita.

I will definately check about the medication. I'm taking Topomax as well and have been on it for about 3 years. I also take Nortriptyline and I noticed I have been feeling eve more "discouraged" and negative ever since I've been on it, so I wil talk to my doctor. I'm sorry to hear what your going through, but like you said one day at a time :-/. Maybe I will look into a chriopractor as well. I'll try anything and of course prayer never hurt anyone. Reading your words helped a bunch.

Thanks again.

HemiL

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 7/24/2010 12:44 AM (GMT -6)   
Hon,

Please think about the one that loves you so much. If you end your life, what would they think? THat you don't love them enough? Please, this is not normal and could be a medication side effect. Please call your primary doctor now, and get medication for depression. And please, post here all you want
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem


Mariposita
New Member


Date Joined Jul 2010
Total Posts : 16
   Posted 7/24/2010 6:56 AM (GMT -6)   
Dear HemiL, i am go happy to hear you will talk with your doctor about your meds.  The meds we take have so many side effects and when taken with other meds, well, we don't know how our bodies will react.  I just got taken off the Lyrica because even though the pain had gone away - now my blood pressure has been slowly climbing.  Even though I am overweight, my BP has been around 116/70 unless in pain then of course it would go up.  However, lately it has been in the 150's over 100 and that scares me!  I don't know which is worse, the migraine or a stroke.  I am to rest during the weekend, avoid stress (like that is possible), and monitor my BP.  I have only missed 1 pill of Lyrica so far and I have pressure again with pain in my temple.  My tongue has not gone numb so I am grateful for that.  Once that starts then I will be up a creek without a paddle again.  I am praying for some mercy.  I just don't want that pain again it so horrible and debilitating but I am scared of a stroke too.  I am considering taking FMLA leave from my job while recuperating because I feel so bad that I have to be out so much.  But it would be without pay and that too would hurt.  I look forward to my next chiropractor appt next Monday.  I hope I make it.  Look on line about how chiropractors can help with migraines.  Also, accupunture therapy.  I will be looking into that soon.  Well, again, take it one day at a time and I am happy for you that you are looking into other options.  Keep rejecting those negative thoughts.  Hang in there.  God loves you and I do too!

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/2/2010 5:32 PM (GMT -6)   
Hey SmurfyShadow and Mariposita,

You both have been great responding to my thread. I've contacted my doctor. He is out of town, but I set up an appointment to see him when he gets back. I 'm hanging in there trying to remain positive.

I will definitely be looking into that acupuncture Mariposita. I've been meaning to for a while. I just haven't gotten around to it. I heard it can help. Aww, I love you too Mariposita. Thank you for all your kind words. I wish you and SmurfyShadow all the best with life and with your health.

Mariposita
New Member


Date Joined Jul 2010
Total Posts : 16
   Posted 8/5/2010 3:24 PM (GMT -6)   
I am glad to hear you're going to your doctor.  Also, keep track of your triggers.  I messed up this past Sunday, and drank 1/2 bottle of a diet fruit drink and awoke Monday am in the middle of the night with a migraine that i can't even roll my eyes without causing horrible pain.  Took a Maxalt but relief lasted 2 hours.  Sometimes, I think these headaches are caused by something else like a parasite maybe because it all started after I came back from my cruise to Jamaica.  The day we arrived back, I had fever, diarrhea and vomiting for 3 days.  Then the next week I started with the facial numbness and leftsided migraines.  The accupuncture does helps, but it only relieves the pain up to 3 to 4 days but the pressure is still there.  The chiropractor manipulation works too for 3 to 4 days, again the pressure stays.  However, all these costs are adding up and I am not working right now.  I had to go out on FMLA because I was calling out sick so much.  I don't want to stay out much longer because i have bills to pay.  My husband has been working so hard doing overtime.  He is coming home dead tired and my heart breaks seeing him so tired after 12 hour days of manual labor 6 days a week.  The Topomax makes me groggy, dizzy, forgetful and nauseous.  I feel so guilty too.  I awake with anxiety attacks crying  hysterically.  My doctor says these symptoms will all pass and to just give it time to let my body get over this adjustment period and it will work out being the better medicine for me.  I sure hope so.  I am very limited to which ones to use since I have an allergy to caffeine.  I am not good at waiting.  But I am keeping a log of everything: blood pressure, triggers, symptoms...if it helps with anything down this bumpy road.  And I keep praying.  Not so much that He cure me or provide me with a miracle because there are others more ill than me, but to guide the doctors to help me live better with my illness so I can still be a productive citizen and christian.  To open my heart and ears to listen and receinve what He has planned for me.  Because in all of this, God must have a plan for me.  I just need to let go and trust in Him.   

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 8/7/2010 9:38 PM (GMT -6)   
I feel for you Hemil and I understand completely. I have been suffering from headaches for ten years. Mine are bilateral, temporal, severe and continuous. No one knows what to do with me. I have tried everything each doctor has said and more and nothing has helped me. I have been 10/10 continuous for three years. I don't know what to do either anymore.

I will pray for both of Hemil and all the other headache and migraine sufferers. It is not a way to live life. There must be an answer.

Take care
   
SUZANE
      
 Chronic daily headaches
 Started in  2000
 Done it all
 No options left
 
Motto:One Day At A Time
 
           

SmurfyShadow
Veteran Member


Date Joined Dec 2008
Total Posts : 2386
   Posted 8/8/2010 11:22 AM (GMT -6)   
ANy clinic usually has another doctor in the same practice you can see in the mean time. You need to get seen now, and not wait. Some medications with these side effects will actually give you voices and tell you to harm yourself after the suicidal tendencies come. I'm only trying to prevent you into doing something, that you'd probably regret later. I used to be so depressed, I'd cut myself. I now have scars up and down my arms. I regret doing it now though.
 
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis, Anxiety
Medications:  Tri Nessa, Percocet, Metformin, Prednisone, Cingulair, Albuterol, Pro-Air, Morphine, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops, Percocet, Immuran, Alvesco, Allerga, Gabapentin, Visteral  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl Undergoing Chemotherapy Taking Lorazepam (Ativan) For MRIs and Anxiety, Surpressed Immune Sytem

catlou1
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 8/10/2010 11:48 AM (GMT -6)   
Have you tried verapamil or any other calcium channel blockers?  I was on topamax when I was originally diagnosed with hemiplegic migraines but it was doing nothing for me except causing additional side effects.  My neurologist switched me to verapamil and my attacks have virtually stopped. 
 
Good luck and I hope you can get some help soon.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/12/2010 6:12 PM (GMT -6)   
Hey Mariposita

I used to keep a really detailed migraine log including triggers, headaches, etc. But it was the same thing everyday so I said “Ehh why bother!”Oh everyone slips up . I slipped up the other day and ate a couple of chocolate cookies. I know how did that happen?! :-) I ended up with a severe headache for 3 days on top of the daily headaches I already have, so yeah.....

Regarding your comment on your headache being cause by a parasite. You know I went abroad and when I came back that is when my migraines began and a doctor wanted me to see an Infectious Disease specialist. So its worth a try. Symptoms of different diseases are often similar and mimic each other.

Goodness, Topamax is giving you all of those side effects. Now that I have been on Topomax for a while, and you know they say hindsight is 20/20, I believe I may have had more side effects than I previously thought I did from that medication. But I'm still on it AND have no plans of coming of it soon, because it did work for me in the beginning, for a while, when I started taking it.

I'm glad you're hanging in there and you have your husband as a great support. Try not to feel too overwhelmed.


Be Well

HemiL

Post Edited (HemiL) : 8/12/2010 5:20:37 PM (GMT-6)


HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/12/2010 6:13 PM (GMT -6)   
Wow smurfyshadow That sounds really rough what you went through. I can't even imagine...


I managed to see a doctor. It seems that the culprit is the drug nortriptyline. I started it last year to treat my Hemipegic migraines. I was taken off a drug in the same family as nortriptyline early last year. The medication had little effect on my migraine but similar effects on my mood as nortriptyline. I never put two and two together, even though there was lot of research about the correlation between an increase in suicidal ideation and anti depressant usage. I'm weening off of nortriptyline right now. So hopefully coming off it won't negatively affect the state of my migraine situation too much. Thanks for the help.

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/12/2010 6:15 PM (GMT -6)   
Hi catlou1

I'm currently taking verapamil, When I first started taking it I was really hopeful because it made a noticeable difference. But then my doctor made adjustments to the medication and that made my headaches worse then they already were, so any progress made was lost. I'm glad to hear verapmil works for you. What other meds do you take for your migraines? Maybe there is something I haven't tried that I can mention to my physician?

Post Edited (HemiL) : 8/12/2010 6:06:11 PM (GMT-6)


HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 8/12/2010 6:17 PM (GMT -6)   
Hi Tmjpain

That's a long time to be suffering with no relief. I'm sorry to hear it. Thanks for your prayers and for your understanding. I will be praying for you too. I agree there must be some answers out there. For all of us!

Sending you all my best wishes,

HemiL

Post Edited (HemiL) : 8/12/2010 6:09:10 PM (GMT-6)


tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2021
   Posted 8/12/2010 7:06 PM (GMT -6)   
Thanks Hemil for your best wishes and prayers. I am having such a difficult time coping.

Please take care of you too.
One day at a time!!

SUZANE

catlou1
New Member


Date Joined Feb 2007
Total Posts : 13
   Posted 8/16/2010 1:39 PM (GMT -6)   
HemiL - I also take 325mg of aspirin and 500mg of magnesium, both OTC. I started out on a lower dose of verapamil and have worked my way up to 240mg. I was also on nortriptyline, but I didn't really find that it made a difference so I stopped taking it. I'm lucky in that I don't get a headache after the aura, I only get the paralysis. Maybe that has something to do with how well the verapamil has worked for me?

penguin14
New Member


Date Joined Jun 2010
Total Posts : 14
   Posted 7/14/2011 12:39 PM (GMT -6)   
Hi HemiL, I'm just wondering how you are feeling now and if you have found any success in treatments for your hemiplegic migraines? Botox is worth a try as it works wonders for some people, sadly not for me. I'm just about to start epilim so will let you know how that goes after being on topamax for ages.

Kind regards
penguin14

Sherri0120
New Member


Date Joined Aug 2011
Total Posts : 15
   Posted 8/25/2011 1:38 PM (GMT -6)   
HemiL put me in your corner. I know EXACTLY how you are feeling. I've suffered from Hemiplegic migraines for YEARS. Some days or weeks I just want to end it all. I've tried topamax and the side effects were horrible. The verapamil intensified the pain. It seems any anti-depressant they put me on just makes the situation worse.

For me when those days or weeks come I just try to remember the good days will return. The good days being any day in which I can function like an almost normal person.

In addition to the HM I also have TMJ and a bad disc in my neck. I am socially isolated by choice because people just don't understand the chronic pain or how much rest I really need.

Two things that have helped me the most besides being on Keppra are swimming and changing my diet.

There is something about being in the water that makes everything all better. I swim with a snorkel so I don't have to twist my neck or back. It is so relaxing and stretches out the spine. It also releases some endorphines that feel great.

I went to gary@performwell.net to find out what my food triggers are. The testing was dead on! I've completely changed my diet and life got better.

But now my neck is really getting the better of me. It is hurting so much it is a struggle to swim which is sort of a catch 22 because swimming is the one thing that really gives me relief.

Hang in there, HMs are no joke. Just know there are others out here that know exactly how you feel.

Sherri

clamorous
New Member


Date Joined Aug 2011
Total Posts : 4
   Posted 8/27/2011 5:12 PM (GMT -6)   
Hi Hemil,

I'm relatively new to this forum and I'm not sure if any of what I'm about to say is all that helpful...but I definitely share some of the feelings of desperation that your message seems to express and I also have been thinking a lot about how I want to get to do things that other young people do, and how hard it is to WANT so much from life and feel that I'll most likely never get a chance to explore those possibilities...
Speaking of possibilities, though, I think that's one thing that keeps me holding on (even though sometimes I resent it more than I appreciate it - I don't know if that resonates with you at all - or with any of you...) -- anyway though, the small possibility/chance that I'll eventually figure this out and get out of pain to the point that I can try to really implement some of the lifestyle changes that doctors recommend (yoga, exercise, breathing and biofeedback, diet modifications, etc) in way that's thorough and intensive enough to really have an effect...I think that if people who go through this kind of thing DO get that chance, we'll live our lives more fully than most people do, you know? And in terms of getting to be young and feel free, I try to tell myself that a person doesn't REALLY have to BE young for all those things...you can do a lot of those things at any age, if you're able to, based on your health...so that makes it seem less urgent, in terms of time, or at least, that's the idea...
I have been suicidal a few times because of my migraines, and there are sort of two overlapping suicidal modes that I go into - - one is really about the moment and the pain I'm feeling in the moment and wanting to escape that pain, desperately -- and another involves a broader look at my life, encompassing all the dreams that the migraines have crushed, all the friendships and relationships that I feel like I've lost because of my deteriorating health, and the feeling that it will NEVER get better -- and when the two modes happen separately, I can usually deal with it, but when they overlap, that's when I feel like I really get desperate...I don't know if that distinction (between the modes) is helpful to you at all, but it's been helpful to me, even if only to give me a way of understanding these complicated feelings. Anyway, I hope some of this helps or that something else has helped you...and if not, I hope that at least hearing that someone understands what you're going through makes it seem a little more bearable.
Oh and on a more logistical note - I have actually lost a LOT of weight since I started getting migraines, and I'm not sure if that's because of the medications I've been on or because I get severe nausea along with the migraines, which makes eating hard some of the time -- but there are definitely some medications that say weight loss is a more common side effect than weight gain (migraine meds AND meds for depression), so if your medications aren't working for you anyway and you're open to trying something new, maybe you can try one of those? It seems like a weird reason to choose one medication over another, and of course I don't think it makes sense for that to be the main factor in anyone's choice, but doctors seem to assume that it will matter to me, probably because I am young and I'm a woman and I dress in a pretty stylish way, so they often talk to me about this issue even when I don't bring it up (which is actually kind of weird).

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 9/30/2011 5:48 PM (GMT -6)   
Hey penguin14,

I hope you are doing better now. I know things were really hard for you the last time you posted. I have not tried anything new. My doctor wants me to takeLyrica. I am very weary because of my previous experience with Gabapentin that did not go well. I am going to speak with a doctor and see if Botox will be helpful. Biofeedback was recommended to me and I have tried Acupuncture. But things have remained unchanged for the most part. I hope things are well with you.

Take care,

HemiL

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 9/30/2011 5:51 PM (GMT -6)   
Hey sherri0120,

I thought about taking up swimming. There is something calming and serene about being in the water. I am sorry about your health interfering with something that you love. I do my best to remember about the good days on the bad day.

I recently discovered a big connection between my HMs and a lot of the foods that I have been eating. I eliminated a lot of food groups from my diet, including gluten and dairy. I went low sugar, and starch and ate plenty of green vegetables. I thought I was ok with that diet. But little did I know there was a whole host of other foods that were triggering my migraines. I was using olive oil and Almond milk (I forgot the tyramine in nuts trigger migraines, but it didn’t seem to be doing much damage) It was when I ate peanut butter two days in a row that I had the worst head pain I have had in a long time.

I really think that people can benefit, as hard as it is, from looking into what foods can be trigger their migraines and eliminating them or drastically reducing intake. Even things like seasoning (not just MSG) we use can be triggers and I like to season my food. So I am going to look into seeing a nutritionist or going on an even stricter diet and seeing what really is contributing to these daily migraines I am having.


Be Well,

HemiL

Post Edited (HemiL) : 9/30/2011 4:54:52 PM (GMT-6)


HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 9/30/2011 5:54 PM (GMT -6)   
Hey clamourous,

I can relate to a lot of what you wrote, especially about thinking negative thoughts when in a lot of pain. I have noticed myself doing that often. That is really when I am most vulnerable. I just want the pain to stop. I can live with tolerable, dull, chronic pain. I have gotten used to that.. But when these migraines get going and the pain intensifies, I feel like I can and would do anything to make it go away.

My doctor recommends those lifestyle modifications too, yoga, biofeedback, so on and so forth. I try my best to do what I can, when I can. When I feel well I go to the gym. That is my biggest goal that I have for myself every day. I take all of my energy and focus on working out and then I am done, kaput for the rest of the day. I get very symptomatic when I overexert myself, unlike you though I do not experience a lot of nausea.

I am very sorry that you have to go through that. Nausea, well nausea and vomiting in my opinion are two of the worst symptoms to have. Thank you so much for sharing your story and your struggles. I hope you respond so we can speak again soon.


:-) HemiL

HemiL
Regular Member


Date Joined Jun 2010
Total Posts : 33
   Posted 9/30/2011 5:56 PM (GMT -6)   
Hello Everone,

I’m sorry I haven’t written you all back who have commented. Thank you for your kind words and inquiring about how I am doing. I am here, stil hanging in there. My birthday was recently and I was very symptomatic and I had to go to the doctor on birthday so that was kind of a bummer ( I know what is that word from the 80s or something, My age is showing) Plus I did not receive many calls from friends or family, since I have isolated myself from people because of this illness. I don’t really know how I feel about that. I am more forcused on my physical health right now, before I can even begin to think about the emotional. Eventhough I know they are intertwined.

I came of the nortriptyline and I felt a little better emotionally , but migraine wise I was probably a tiny bit worse. Anyway, I am stronlgly considering getting a new neurologist. This doctor it seems has strong beliefs about pain management regarding migraines/headaches. He refuses to budge no matter how much pain I tell him I am in. So our relationship will have to end. I spent many days in blinding pain, because he refused to give me stronger pain medication. I’m not asking for morphine or anything just something stronger than “tylenol”. I only stayed with him, because he has “treated” so he claims, Hemiplegic migraine patients before. So I felt a ray of hope hearing that.

But I should have seen the red flag when he told me I could go back and work in the condition I was in with daily migaines episodes. All I needed to according to him was to simply "Improve my healthy habits by drinking water, exercising (while paralysized on my right side)and eating 3 square meals a day.” That is the cure to hemiplegic migraines people. Sounds nice and simple right!

Not to be all cliché, but being ill has really changed my prespective on life and how I feel about people, relationships, and just my whole outlook on life. I am truly a different person then I was 4 years ago before hemiplegic migraines entered my life. I hope this was not too soul baring. But if it was,……. hey!!!

HemiL

Post Edited (HemiL) : 10/1/2011 7:04:33 AM (GMT-6)


lotus flower
New Member


Date Joined Oct 2011
Total Posts : 2
   Posted 10/28/2011 6:40 PM (GMT -6)   
Hi Penquin Iam going to start epilim next week has it helped you? i am just being weaned off topamax I couldnt cope with the side effect its a shame really as i dont have any migrains but I am having about 6-8 auras a day
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