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Jangle.......

Where you have spoken about NET expression being the main source of the problem and not the NE levels as such, could this explain why some potsies like me can manage exercise at the time!!! Lets say 15 minutes on an exercise bike for example, I would reach a pretty high heart rate as you would expect, but the real trouble of racey tachy and that unerving wired feeling comes on anything from an hour or even sometimes 3 or 4 hours, or just once you have stopped what you are doing for the day and are sat on the settee in the evening and your body feels like its on the bike still. Is this because the defected NET gene can not get rid of the extra adrenalin you had to use on the bike earlier and its floating around the system? If the is the case do you think they will be able to mimic this NET gene in time!!!

I tried Mirtazapine (Not sure if this is an SNRI or not) but had the same side effect of total insomnia, feeling of being on speed, and so hyped up i couldnt tolerate sound or light. Had to stop after a week.

Issie i have tried Tramadol but it makes me feel more sick than codeine which i cant understand. Why could this be do you think?

Im exactly the same, my GP couldnt find an Immunologist Consultant that would be interested in me as they do not have a back ground in POTS. I mean please dont state the obvious!! So i emailed some myself that i tracked down and hay presto i await for an appointment!!!! Shouldnt be this way but its what we have to do. Do many other always pick up viruses when they go to the hospital or go for bloods ? This is why i think i could possibly have problems in this area.

So what would they have given these people in the way of treatment in this study once they discovered this? Is it IVIG etc?

HA HA!! Good for you!!! I personally describe POTS as having sludge instead of blood running through your veins!! But i like your version better, i will use that!!!

Have you tried one of these? This is what i had

http://www.ncbi.nlm.nih.gov/pubmed/20464617

When i had my steroid shot in my neck which was a nerve block injection for migraine, it took the pain away for 2 weeks, my tachy was much better and it was successful in that respect. However as i am type 1 diabetic, the impact it had on my sugar levels was terrible and my insulin was resistant for almost 2 weeks and it was scarry.

However if i hadnt of been a diabetic then the steroid would have helped me for 2 reasons. The Pain firstly , and it helped my tachy because it did thicken the blood, and bring my heart rated down. In my opinion.

And also spinner

I could be wrong here, but i would guess that maybe you would get even less sympathy being male? I dont know. Maybe Dr's dont see you as a winging female when you go to appoitments so you have an advantage there, but i would say the rest of the general public would think being male you should cope more. Am i right or wrong in your case?

I think it really is a case of until it happens to you people do not understand. What shocks me is again, people who are close to me and who i think understand will say something like, oh i am so sorry your not well you sounded so good yesterday. Firstly yesterday was yesterday, i may have been 10% better than today and thats why i sounded good, but really i wasnt doing well then and today i am worse!!! Does that make sense lol!!

I think what people dont understand with POTs is it isnt like something like say Diverticulitus. I mean absolute no disrespect to these sufferers here, i am simply giving my opinion on how i see the comparision between the 2. Diverticulitis from what i understand you can have awful, awful flare ups and then go into remission for a while and function pretty well (this is inly based on my friend that i know) POTs you can be ready to get in the car and go shopping, get to the car, and in that space of time you feel like you are into 3 days of a serious flu virus. I hate the way i can not plan a single thing because i can feel like death in literally hours! I think thats what people cant understand and the reasons why this can happen to us.

Why dont you try some that are just knee high to start with and see how that feels? I wear knee high in the winter but i just cant stand the feeling for them any higher, it makes my nausea worse being tight around my hips and tummy! You cant win at times!

I am very similar to you too Pam, at 24 i started my own business and was doing really well and actually turning down work even with a credid crunch! I gave up work a year ago, had to move back to my parents, put my belongins in storage, and lose my business and my own house. All very sad, but this year i have excepted it and am in the process of writing a book based on my experiences with my old business and looking at part time work i can manage from home. Is it what i really wanted to be doing at 29? No.... But my saying is, it is what it is!!!! I have tortured myself this year that i am not better despite taking 4 years for a Dx, and in desperation to get my "old" llife back i have stupidly taken drug after drug with no breaks and side effects that have only made my heart rate worse! I am slowing off on the meds for now and concentrating on positive things i can manage.

Have you thought about wig making? Or semi permanent make up? Its a skill that there is a demand for. Or how about working part time from home could that be an option, what about sitting down to do hair extensions? Instead of being a mobile hairdresser could some of your old clients come to you. My hairdresser sits on a stool when she does my hair. I also used to be a beauty therapist and a there are a lot of beauty treatments i would do from home sitting down. But i dont know how bad you are, sometimes its not just the sitting down its the socialising, having to deal with people thats the hardest thing when you feel so sick.

Things will get better, you must think that way even though i know it doesnt feel like that now

i notice you say on your profile no drugs. Is this becuase in your case they have not helped?

I was going to say this, i had a virus 2 weeks ago and i was in bed for that length of time and i felt like death, more so than a normal person that i went down to ER. The trouble with POTs is we feel so bad every day that things like a virus or a totally separate health issue can go undetected for days even weeks, as we think its part of the normal feeling crap. It took me about a week before i realsied that i had a terrible virus/infection with my white blood cell count very high. But i was carrying on like it was normal POTs things getting me down! Needless to say i crashed on the second week and couldnt eat or get out of bed. Maybe you should get your bloods checked.

Im so sorry you are feeling this way.

I have mine lifted and i would say it does benefit me, not much, but the smallest amount of improvement i welcome!

My God how i wish there was! I am so with you on that score on diagnostic rationale for migraine, sadly i think its more a pin in a book and thats your drug to take home and try, never mind if its dangerous for you and ends up making migraines worse!!!

Thanks Alex

I must say i did ok on it. I was lucky that laying down didnt cause me any high BP's compared to standing.

I think its one of those drugs you have to try and just monitor yourself.

Good luck

Can I ask others if they have experience with testing for Hypolomia.

My Prof has said it can be hard to test for and the best way is via bloods.

My Renin and Aldosterone bloods have come back as normal, we are looking for evidence of low blood volume.

Is it worth having a 24 urine to look at the levels that will be in this?

Also apart from catecholamines levels in a 24 urine, can anyone give me any more idea that maybe worth measuring for POTSs, seeing as though i will be going to the effort to do this?

Thanks......

Its seems to happen to us all at some point, we may feel the beginings of feeling that little bit better we feel ready to take on the world, then the next day you can feel awful before you even get out of bed, and know its going to be yet another bad day.But i am sure you will figure out a way around getting through office days like that!

Thank you everyone for your help.

First of all, i didnt do well on a trial of Lyrica and really dont do too well on a lot of drugs, so the more sure i can be that i am on a drug or trialing a drug for the right reasons it will make my life easier, the reactions last for weeks when they are bad you see.

I have been type one Diabetic since i was 11, i have been told from the tests i have had that its unlikely to be autonomic nueropathy from the Diabetes and more the EDS causing my problems.

My POT's Dr came to this conclusion by having the autonomic testing of placing your hands in ice and they take a load of readings (not sure exalcly what they are gauging here) i also had a 24 manometry on my stomach that reads the muscle contractions and rythms your intestines should perform and mine was normal, so i would think this rules out Polynueropathy. But I am not convinced they can rule out SFN with the basic tilt table/stress test and more "normal" POTs testing.

Thank you for the Levine and Saperstein infromation i shall take look. I do feel not totally satified they can rule SFN out from what they have done and having the Diabetes for so long.

Can anyone offer any advice please.

I have had exstensive autonomic testing and GI testing over the last few years but i feel the more information you can gather on your body, the more chance you have of fixing yourself.

I would like some help by anyone in how i can word this to my POTs specialist and request a SFN test?

I believe i have small fiber nueropthy or a very high chance of this. I have type diabetes and suffer with Vulvadynia which is a nueropathic pain issue in itself. I feel that my migrianes and constant nausea and discomfort if to do with SFN as i have had every possible stomach and bowel test in the world which was normal so i do not have a mechanical problem.

I really think this is an issue to a lot of my daily symptoms, but very often i have the response from Dr's that, it doesnt matter whats the causing problems, its about treating the symptoms! This infuriates me and what makes things harder for me is because i react so badly to meds, taking Lyrica or something similiar is a big deal for me. So i want to be a sure as possible it would beneficial.

When up against Drs like this how have any of you had success in pushing for things like this. In the UK there is only one hospital that does this so i think i have to really push for this if i want it.

Thanks

I have Botox too, its has helped with the pain side of things thats for sure, especially in my neck. I know if they dont inject it in the right areas, you can have problems blinking or eating etc. Luckily i am ok and its the one thing that has helped me.

The nerve block injection that is different to Botox, that is a steroid and i did not react well to that, but its something you should consider if Botox helps.

I can smypathise with many of your problems too, my nuero is not a cross over for POTs, he does see EDS patients but treating migraine when you have POTs is proving to be an absolute nightmare for me. I have tried a lot of drugs recently for Migraine, unfortunately for me Verapmil was one of those "put you in bed" drugs for me, but i am so sensitive to meds at the moment. Its very easy when you have POTs and Migraine to bounce from consultant to consulatan because no body really wants to commit. So you are very lucky to have the 2-1 dr!!!

I too have major GI issues that are largely down to migraine. I know this becuase when the migraines are not there the nausea is around 60% less which is massive on a daily basis. I am so frustrated because i have daily chronic migraine, even when the pain has been blocked by the Botox or Nerve block injections, my head is still in a state of migraine, so the nausea and vertigo is still there! If only i could find the drug to calm my head down lol!

If you want a treatment that is "side effect free" although i know this does not exist, Botox has been a life saver. Its given me some relief. The Nerve block wasnt so good, the steroid took me 3 weeks so get over, but again this isnt a normal reaction to have, a lot of people it cures them (all be it only a week or so)

Another excellent drug is Sebelium. Its a CCB. The few people in the UK that are on it have had a big success with.

Hope this helps.

Does anyone take B2 and C0q10 for migraine prevention?

Just to add the same, i have given up on H1's. Tried about 7/8 in the end and just no matter how small the amount it will not work for me. I have the Quercitin in the draw to start soon and can tak Nasalcorm no problems. Hope this helps anyone else.

Thanks Anna too.

2 completely different opinions then! Whats new!!!

Would you say the miso and soy sauce diet would or could possibly help with your migraines from what you have tried so far? I guess it's salt properties are helpful for low BP too.

How often are you eating it a day. You say you are not bothering with even the supplement version of kojic acid?

Very interesting though.