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Well again thanks for your comments, Im in the referral faze for seeing a Geneticist and Immunologist so it could be anything up to 3 months wait, but any questions you what me to ask in mean time write down and let me know. I feel its going to be a long night glued to the laptop!!! Oh how i wish the days of Friday nights being a party animal could exist still !!!!!

I dont appear to have a any "carrier" genes flag up, but when it comes to Drug Respose, Interferon Beta therapy i have a increased odds of responding. This is a drug for MS. So forgive my igonrance with this as i am so new to it, does this mean only if i developed MS this drug could help, seeing as though MS is a type of form of Dysautonomia could that particular type of therapy help in POTs? Have you as yet tried medicines that you believed would help your case as a result from 23andme yet?

Thanks Issie Just downloaded that now, looks veryyyyyy complicated, i am deterimed to try and read as much as possible though, do you know how much it does cost to get someone from 23ANDME to analyse your data to what flags up, especially if i wanted to take it along to my specialist in couple of months time

I totally agree with every word of that!

God yes, i went to a ENT specialist who ran every test from hearing to balance to filling your ears with warm water to bring on vertigo (was very unpleasant) They were looking for things like Meniere's disease or what they highly suspected i had was BPPV (from what some of you are describing you may well have this and not realise it, its also eased with certain head and neck movements carried out by a Dr) I was housebound, couldnt look down to write my own name, nore have a conversation with 2 people across the room and look from left to right as vertigo would literally kick in!!! That i think was the lowest point of my POTs . But all these test came back negative so i was then reffered to a nuerologist who said its to do with low CFS pressure headaches and that alone adds to the migraine, never mind the fact i have EDS and on Midodrine so my poor little blood vesells in my brain dont know what to do I was ruled out of having a CFS leak, so the conclusion was my vertigo, dizzyness and extreme nausea from simple daily tasks was the migraine predominantly! The trick is you have to "re-train" your brain i was told. So i am on a mixture of POTs drugs and now when i feel i can, slowly start to do "Vestibular Rehabilitation Training" try googling it. I can say im not cured, but i am writing this message now and 8 months ago i was a zombie that couldnt focus on anything less than 2ft in front of me. Its kind of chicken or the egg, you need the pots meds to improve blood flow, you need migraine preventatives to stop the attacks as the vertigo and sickness can last days despite your migraine ending. You then need to slowly adjust your brain back to being able to "cope" with things. My cosultant explained Vestibular brain training to be like being an ice skater, they had to practise and practise to spin around and around like that and not be sick, the more they practise, the easier it became. I know this is far easier said than done with dysautonomia but hey, im on my laptop and reading and writing now!!!

Just following on from another post i have just written, i am interested if any Dr's have officially Dx any of you with POTs that they will clinically say come under more than one category. For instance with me i have hyper POTs, I have type 1 Diabetes and suffered from Psoriasis, both kicked in at puberty, i also have EDS, could i be someone one who has PD/HYPER and autoimmune POTs? Just curious to hear from others..........

Hi everyone Just had results back from 23andme, i can make sense of some of it, until the whole DNA sequencing begins and then it quite honestly loses me, i would really like to get a better understanding of this as i have persuaded my GP to refer me to a Genetics center in Birmingham (UK) and also to have any more in depth auto immune factors thrown in there for good measure to be looked at. I have type 1 Diabetes and suffered from Psoriasis, both kicked in at puberty, i also have EDS, could i be someone one who has PD/HYPER and autoimmune POTs? Anyway if there is anyone who can spare a few moments in their spare time to help me work this DNA stuff out as i want to be prepared when i get infront of the next lot of specialists and know the right questions to ask. Thank you.............

Ita so wrong we have to go through this for so many years when inexpensive, simple, cheap tests can dx POTs or EDS etc...... Treating it of course is a whole new ball game but to be told whats wrong AND believe it is priceless If its any consolation Miqual, at least now you know your not crazy or alone!!

I too had this, they put it down to the migraines and the part of the vestibular brain that is the centre that processes so much information like balance, movement etc. Its all to do with blood flow to the brain with the POTs but if you are a migrainer you are far more likely to suffer with things like this and motion sickness too.

Oh for sure, infact i dont even know if its worth asking my nuero really, but how risky is it going to an expert in Hydrogen peroxide therapy, explaining about EDS and POTs and trusting they will know if its safe or not. I guess its something you have to way up. Will let you know how i go though.

Thanks Katy for that, i will ask my Nuero if it has been trialed for nerve blocks in the neck for migraines.

Like you NM, I get a racing heart that pumps through my chest, feel very very sick and just can eat a thing, my hands feel jittery and instant migraines that are 9/10 and the next day i am exhausted. What meds are you on at the moment can i ask?

http://www.tolifehealth.com/HydrogenPeroxideTherapy.html Meant to add this link too

Sadly i would say something stupid like 90% of cardios in the UK do not know what POTs is, it maybe worth your while looking into Nueros with a background or interest in POTs too just to give you more options. Dr Arnold Deering in Gloucester is a cardio with POTs background and he has a great attitude and manner! i Like him a lot

I have a very close friend who's wife refused chemo for breast cancer,(i don't know the exact reasons why, but she did) and instead they went together to both try Hydrogen Peroxide Therapy. They had it administered through an IV over six months, and the ladies cancer shrank away and she was given the all clear. Now i do not know the full background to the story, but i do know these people quite well, they are honest intelligent people and i believe for what ever reason be it physical or purely a placebo mental effect, the Hydrogen Peroxide worked for them. They now have a yearly "cleanse" of this therapy and its been suggested to me. Would i be right in saying this is all about NO levels ultimately? I think with POTS you have to be so careful as we have such delicate systems, but has anybody heard of this, tried it or thinks it would be a good idea to try? Here is a link below as to what it can help with and what its about http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml

If your gut istinct is that its the Florinef you are probably right. I had this happen on Lyrica, yet it is taken to actually help pain, so figure that out!! Sometimes its hard to know whats causing what, but i usually am right with my gut feelings

Same here, Well done for being brave enough to give it a shot, i think so many of us feel we have nothing to lose half the time by trying new things. Im sure you already have read up on whats the next pill to try though and mentally planning how you persuade your Dr to give it to you! I have a list made, isnt that sad!!!!

Its strange because for me this year i have my classic pots symptoms slightly better controlled i.e HR and BP, however my migraines in the last six months are just snowballing! I believe when you start a med and have to stop for reasons being they do not like you it can disrupt your entire system and probably make things like headaches worse again. Drs say "oh well we just move on to the next drug" But i believe having a drug in your system that didnt like you even for a few days can have lasting negative effects, in my opinion anyway. Hope you get some where with your Nuero, do let us know how you get on.

I have periods too where i take double the dose in the morning for low BP, then a few eeks later my BP can be perfect all day long and i dont take it for weeks. I did not experience any with drawels on it in my experience.

Thank you all for your input. I am of the same opinion that if it is helping when so many have failed then what have i to lose. Its reassuring that lots on here take a small does and not to get to concerned about it. It by all means is no miracle drug as so many of us say on here, but even the smallest improvement we are are grateful for. Thats really interesting how Klonopin helps MCAD thank you for letting me know that. Again another clue why this one did not effect my heart in a bad way like so many do. Amy- Sure i will keep you posted, if you are interested you can PM me and we can see what other meds we have both been on and what might help us both as a result.

Had a few people ask me how i have got on with mast cell stabllisers, as H1 and H2 blockers i was not doing well on. Just to let you know Nasalcrom or Rynacrom in the UK here, has really helped with my wheezing in breathing and no side effects. You can get it from your GP for those interested. Thanks Issie for recommending it. I'm considering starting slowly when on this H1 and H2's to have more success with it, or just wait a while

Hi all Just interested on your thoughts here, i have tried a very low dose of Clonazapam, and all though i was refused it by 2 cardio's earlier in the year, i can say its the first drug in 4 years that i feel some sort of benefit for with my POTs. I no Benzo's are addictive and Dr's do not like you being on them but if 0.5mg in the morning and 0.5mg at night just calms my heart rate ever so slightly and just makes me feel far less hyper then should i care about long term issues? Can any clever ones on here tell me what the Clonazapam does to help me feel better, is it to do with NE and Andrenalin? I am still really struggling with chronic daily migraines too and i was wondering if a higher dose of this could possible help them too? Any one noticed that? Also i am about to try Lexapro and read a lot about it on here, general idea is that if you do not have an allergic reaction you should give it 4 weeks? Would people agree thats a sensible time frame in their experience?

Hi Peregrine, I have stopped the Lyrica and its all gone away...yet another pill that doesnt out weight the benefits. Can i ask what you take for migraines as i think you and me have agreed before we have a dual type of POTs!!!!

Can anyone tell me if this will probably pass or if this is a reason to really stop. Benn on Lyrica just over a week for Migraines. I had the usual sleepyness and general wrapped up in cotton wool feel in the day on it, which i actually thought great, i can deal with that! My heart is usually the first thing to play up on new drugs. I have taken it so slow and am only on 10mg once a day but last 3 days i am now getting lower back ache quite badly as well as cramps in my legs. This is definatly due to the Lyrica nothing else. Im just worried it could be kidneys with the lower back, but cramps in legs cant be a good thing, can anyone suggest what this maybe and if its a reason to stop or just keep trying to push through it.

You know for me its one of the really annoying bad side effect to having POTs, when i listen to music i love it excites me, like most people, i like it loud and i like fast house music! But literally after 5 minutes i can look at my hands and they shake and my heart is racing, now someone tell me that anxiety and i will show them what a black eye look like, i am guessing this is to do with our sympathatic nervous system? Would my NE levels be higher do you think if they tested just after the music had stopped? Katy i see you take Depakote for migraine, how have you done on it, I failed with CCB blockers, BB, and am now on Lyrica for a week but getting side effects. Can i ask how long you have been on it and how long did it take to begin to work?