Hi from want hope

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Hi everybody

Post by Valerie on Mon Oct 03, 2011 7:33 pm

HI Everybody
Thank so much Tee for your warm welcome. I'm so pleased I have found this site. I have had hemiplegic migraine since my early forties. They started when I was being given chemo for a platelet disorder. No medication has helped so I've managed them mostly on my own, though they can be very frightening at times especially as I have ended up in hospital several times when I have been misdiagnosed as having a stroke. I guess the symptoms are very similar, but thank heavens I have always regained function in whatever side has been affected. Strangely enough the only thing that has really helped was when by accident I was diagnosed as hypothyroid, since taking levothyroxine the number of attacks I have has lessened and I don't suffer with permanent brain fog anymore which I found really scary.
Anyway good luck to everybody I know just how draining migraine can be. Valerie

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Re: Hi from want hope

Post by whatgoes? on Mon Oct 10, 2011 10:05 am

Welcome Valerie, you are in good company here and as a fellow newby I can testify that there is indeed strength in numbers, as well as warm hugs here. Tee is fantabulous and how she does it I have no idea.
I too find my HMs are related to my thyroid condition. After a number of years having very strange symptoms and migraines while seeing a handfull of neurologist who did nothing for me, and finally as well as quitting an extremely good job due to my health, my general practitioner declared that he really believed I had an underlying thyroid condition (even though my blood work said otherwise.) We mutually decided to give .levoxyl a try knowing that if I did not have hypothyroidism that the side effets of the medication would make me want to stop them. My GP was right and most of my symptoms began to just go away including my daily migraines. Things went very smooth for about 6 years before the migraines began to slowly make their return. In 2008 i had my first really big HM that landed me in the hospital much like you have experienced believing it was a stroke. All my miriad of tests came back just fine.

A year ago I told my endocrinologist that I thought my medication needed to be raised, as i explained a number of returning symptoms, but he felt that due to my numbers that appeared good, he sound leave things as they were. sadly he accidentally posted on my script that I could be given a generic brand over Levoxyl. It took a while but just prior to my latest big blow out, I knew my thyroid condition was in a bad place, but had an appt to see my endocrine doc in a week. There was at least one other trigger, which invoved loud strong vibrations that also set off this lattest patern. When I had the big HM in Aug I saw a number of doctors who just waved it off to vertigo an a classic migraine, I was unable to reach my neurologist. it was my endocrinologist who was most alarmed about my on going condition and sent me immediately to the emergency room, as well as corrected my thyroid meds. The change and increase i ny thrroid meds began a big turn around as therecwas nothing else anyone was doing for me. While that was a big turn around, i was still stuck in the repetative migraine pattern with some of my undesired HM symptoms now a part of my life.thankfully a new neurologist is now trying to figure things out for me and help me.

I do wonder however if beyond the thyroid issue it ther mat be other hornonal issues possibly the hypoyhuimus and or an adrenal gland problem. Does anyone else have thyroid problems, or any thoughts on this?
Best wishes,
Jerri

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Re: Hi from want hope

Post by Tee on Mon Oct 10, 2011 7:11 pm

This is interesting - I have no real experience in this field- but a close friend of mine has thyroid cancer and when she comes off her tables -pow she goes down with big migraines....... interesting also is that when she goes off iodine (which she has to do for treatment) again pow migraines......

I was therefore wondering- have either of you had tests for Iodine levels?


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Re: Hi from want hope

Post by whatgoes? on Tue Oct 11, 2011 2:03 pm

good question, I will bring it up. thanks, Jerri

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Re: Hi from want hope

Post by whatgoes? on Sat Oct 22, 2011 3:23 pm

Hi Want Hope, I hear you loud and clear. The other great saying I hear is, "but you look so good!", or from my poor weary husband, "what's wrong with you now?" like I REALLY want to be sick. My pain specialist this week told me I really could not be experiencing all that and who diagnoised me with Basliar and Hemiplegic migraines (my neurologist.). I sometimes wonder if his cocktail of meds are making me sicker. In fact he gave me some scripts for new meds I am not filling until I see my Neuro and get his opinion on things. I will say that like you I am leary of sleeping meds, but have found that a very low level of Valium (1/2 of a 2 mg tablet,) helps me get to sleep but is not so sedating I am unaware of things like a child or too groggy to function in the morning. You can try valerium which is the herbal form and not a precsiption. Are you drinking caffeine or things that give you energy, decongestants or nasal sprays many which will keep you awake. I know for me, I have to be careful with those as they will keep me from getting to sleep. I have one caffeine beverage in the morning just to help me get going and that is all.

You also mention the numbness and pins and needles feeling in your hands. Some of us here also know that beast. On some of the other posts we have discussed it and while there are some nerve pain meds that are supposed to help like Neurontin, Lyrica. And Savilla, you might consider a B vitamin imbalance. B 1, 6, & 12 are all very helpful with this problem. Most B vitamins are flushed right out of yor system very quickly, but there is something I saw posted by someone else on here that said ther is some product that helps the body absorbing B vit. Better. Also there is now a synthetic B1, called Benfortiamine, made to in a oil base so it stays in the body longer and is then able to be absorbed into the cellular level where it is needed. There are some clinical studies that show it is very helpful for peripheral neuropathy and similar issues like we arevtalking about. It works very well. I have been having this same problem lately and it wakes me every night just after I get into a good sleep. Only i also have this searing hot horrible pain in my hands, forearms, and sometimes even my feet, along with the pins, needles, and numbness. Last night I took 2 sublingual B6 and 12, plus 2 of the Benfortiamine (B1) I also rubbed some Emu oil on my hands and lavender oil. It is the first night in weeks that I have slept thru the nighmystic out my hand pain waking me. There is also something called DMSO that is a liquid product in a purified form to be used topically for pain relief. It is the same thing in WD40 that people claimed for years helped with arthritis pain, only WD40 is not pure and can put toxins into your system. The DMSO works and now the FDA has approved a version of it here in the US. My DR just gave me a sample to try, it works very good. A $14 bottle of DMSOmfrom the health food store is pretty much the same thing as the RX Pennsaid, and who knows what they are charging for that.

You mention that you use lavender which I think is great for a mirad of things. I put it in a spray bottle diluting it with water and shake well before spraying. I like to Spritz my pilow at night, and also a little on a fluffy wash cloth I have folded and sewn to drape over my eyes and nose. then i get my self snuggled into bed, put on my ear buds and listen to some deep breathing and deep sleep meditations and drape my eyes and bresthing in the frsgrance. There are some terrific guided imagery, meditations, and hypnosis recordings out ther that really do help with getting to and staying asleep. Deep breathing excercises are very helpful,and healing, and when you focus on the breathing pattern ( and maybe listen to some soothing ocean wave sounds at the same tie,) it will often lull you right off to sleep. I have a bunch of these recordings and wish I could share them with you. Hope these ideas help.

Stay hopeful and don't listen to people who have no idea how blessed they are with good health and make wise cracks about the others who are less fortunate. If they only knew what people like you go are going through and could walk in your shoes for a week. oh to hear them then

Best wishes,
Jerri

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Re: Hi from want hope

Post by Sheena Hulston on Sat Oct 22, 2011 8:39 pm

I Love the "sile it cant be that bad" comments Yes it can!! I just dont worry about the comments on the dark glasses any more. Just been to London and have been told I may have another form of rare migraine on top of HM and being tried on that at the moment, so back to changing meds.. off the Topiramate and onto Lamotrogine which I have never been on. I had settled into Topiramate quite well and now to change again is a bit of a worry as you never know what side affects you will have to go through untill you settle down on them again. Never mind though.
You rant away about stupid comments about dark glasses and smiling and I will join you!! x
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Re: Hi from want hope

Post by Tee on Sat Oct 22, 2011 9:06 pm

Smile some people and even some doctors can be so dumb at times - I have lost count of the comments I have had re dark glasses ..... Razz to the all

Sheena - what was the diagnosis of the new mig - if you do not mind me asking?

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Re: Hi from want hope

Post by Sheena Hulston on Sun Oct 23, 2011 1:05 am

Hi Tee After the 5 hour drive and the underground trip I just remember him quoting some letters at me and getting excited then asking if I would have some blood tests and meet a new consultant , do some blood tests and go into a trial.
Dr S is good though and always CCs me into my GP letters so I will let you know when I get the copy. All i can remember is its as rare as HM and its like Im being axed in the head and it makes my eyes water and my eye drop, and although the flunarazine has worked on the HM it hasnt touched this mig that I still get daily.
Sheena
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Re: Hi from want hope

Post by Tee on Sun Oct 23, 2011 1:16 am

Oh yes his letters are great Smile

Diagnosis is the first step to freedom Smile

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Re: Hi from want hope

Post by want~hope on Mon Oct 24, 2011 9:11 am

Hi guys.
Well I have tried alot of the sleeping techniques and so far I have had some good results. Its not helping me sleep but I do feel alot more relaxed. I got a relaxation cd with sounds of the ocean but just found I needed the loo more lol.
Some bad news tho. I had a black out at the top of my stairs and I'm now on crutches as I dislocated my knee and damaged my mucle and ligaments, bummer.
I've been in touch with PALS and hopefully they will help me out. They told me the PCT are waiting to hear about test results that were done in May. Starting to feel like I've got more chance of winning the Lotto then getting my operation by next year.
xx

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Re: Hi from want hope

Post by Tee on Mon Oct 24, 2011 10:11 am

Oh poppet I am so sorry to read that - big hugs.

Although you made me laugh with the CD and loo Smile

Have you tried this for relaxing and sleep?

http://migrainetalk.forumotion.co.uk/t373-buteyko-breathing?highlight=breathing

Good news about PALS - fingers crossed they can help things move faster....

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Re: Hi from want hope

Post by whatgoes? on Mon Oct 24, 2011 3:42 pm

Dear Want Hope, OMG I am so sorry to hear of your fall. That is horrible!! I do hope you will mend quickly and get the results you are waiting on so they can make some determinations on how to help you.
Do you think the fall was a delayed reaction to the ocean sounds and you finally fell asleep at an inappropriate time? I am sorry, your situation is serious, but it is just my nature to try and bring humor into the picture. Hang in there,

Jerri

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Re: Hi from want hope

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