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Sheila do you have EDS?

This can account for so much of our pain whether muscular or nueropathic. People with Fibro that i have known have only just been dx with EDS so all the years of intense physio therapy has in some cases like my friend, made things much worse as they have given her intense exercises that have literally torn ligaments etc.

You could try it, there is a post just down from here on binders for this area in case you have not read it, some great product advice.

My migraines are pure evil from the day before my period starts until about 4 days in, i usually spend atleast 2 days in bed becuase its not just the cramps its the migraine and general yucky Pots symptoms that are multiplied by1000!!!

Im currently taking a lot of new meds so i am wondering as there is a proven link between estrogen and migraine what i could take, even on that bad week of my cycle I am told its becuse to much estrogen is around when you have your periods? Is this correct? If so can anyone advice on natural tablets, do homeopathic things work well for this? I cant not go on standard contraceptive as i am allegic to Dianette and many others as i found out the hard way as a teenager!!! (late teenager i would like to add lol)

Any suggestions what has worked for you ladies???

The feelings in my hands are like they are engourged with blood/ they tremour slightly and feel like i want to clench them tightly. I know it sounds very strange. Im wondering if you just pushed through these feeling and did intense exercise for a week or more if the body would re adjust. A little bit like a post thats just been written about exercise and heart rate.

Im in the UK and on those cloudy, damp, stiffling days my migraines are worse and i feel generally worse! I actually feel better in the sun becuase then my my feet are no longer blue and like ice blocks and i just have more energy, however if that balance is tipped just ever so slightly to being too hot (as much as i love the sun and the heat and the beach) it can cause more headaches...and other problems..

i think i am in the wrong country if damp weather doesnt suit, can i come and live with any of you guys please?I wont be a pain..

Im no expert but the criteria for POTs is 30 beats or more from reclining to standing, so i guess the answer would be yes, i had a very high up prof be prepared to dx me on the spot with POTs on my first consultation with him counting my pulse laying down then standing up.

Hope this helps

Exactly a delayed reaction, i have to be so careful because my body is used to having a stupidly high heart rate all the time, i could do on a good day a half hour -hour gym session but boy that night it could feel like i had an elephant sat on my chest, that happened when i had my stress test at the autonomic unit where they had me on a recliner bike, the nurse was saying to me "are you ok to keep going?" and i was like "sure piece of cake". After ten minutes they checked me over and i was fine and free to go, one hour later i am at the train station ready to go home and i could not get out of my seat, i could not breath, i could not see and my chest was tight and i was very frightened.

My lesson is i am slowly trying to build up on exercise, sitting on those power plates or using them for you arms or tummy is a great way to tone without your heart rate creeping up, in fact i will post on that, but obviously today i pushed my limits too far, and for me the only way to help with this is to take extra Klonopin.(this is not advice i am giving to anyone on here, this simply helps me in my own experience) How do others cope with this happening?

Can anyone please tell me why i can manage to exercise how a fairly fit "normal" person would, however later on that evening say 4-5 hours, why do i have bad tachy and the horrible adrenalin surges you feel in your hands inparticular. Is this down to NET deficiency that is spoken about? Is it becuase there is still to much adrenalin spilling over into the blood that the body cant get rid of?

Im going to see if i can obtain Ketotifen this week from my GP (Im in the UK) so if i can get it i will let you know how i go on it, my tummy is still sore days after stopping Nystatin, wish i had never taken the stuff!!! But thought was worth a go for my constant thrush. So need to wait just a few days to let my tnny settle down then will start the K.

Its interesting Issie what yo say about vit C and how it can give you lower GI problems, i have just realised that CQ10 at 100mg is bothering me. Im really upset about this because my nuero was talking about putting me on this for migraine at a high dose. I am taking it in the soft gel form. Does anyone know if supplememnts are more potent as gel liquids than chalky pills, could this be why the COq10 is making me dash to the loo so to speak...

Its strange with me, i hate when i have to eat really, about an hour after eating i start to feel very sick and this lasts hours. I have had every gastric test/study done, all normal so i can only put it down to blood pooling, although Midodrine and Octreotide did not help me or its part of the MCAS thats not under control yet.

That was the type of thing, of course there are exceptions, Tramadol is worse than Codeine for me but Aspirin and NSAID's are not on my xmas card list. Thanks again.

Thank you

Yes i have heard the same, i would say my racing heart rate in the mornings are much better and i have less wheezing so i tend to agree with Afrin's theory, although of have started nasal crom at around the same time too, but i feel that both are helping.

Oh is it really that much, thats not fair they should charge double of a normal pre scription just becuase its a compression garment.

Batik, just seen you have a lot of Dx like me, what do you take for your migraines do you mind me asking?

There are lots and lots of posts on here about MCAS and drug treatments and drugs to avoid. Recently somebody did put up a very interesting article listing a few drugs that were bad for Mast Cells or "degranulators" I have been trying to google a more comprehensive list as to what are known to be good and bad medications because so far for me, drugs that have tolerated tend to be those that fall into the no, no category for MCAS.

Does anyone know links please?

I would say the same, i am still on it, been a few weeks now 0.5mg just seems to calm the system and help my migraines and surges slightly too, not a miracle drug by any means but more positive than negative.

Yes have a look on the internet at medical compression websites, if you see a make and colour you like then you can write the model number down and they are all isually on the system, i would say the Scholl are the best the, i usually have class 2 in winter.

Just thought i am type 1 diabetic so i dont pay for my stockings, but i think it would be the usual £7 something charge which is still cheaper then buying yourself.

Just to let anyone on here know from the UK, that compression stocking in all makes, colours and sizes are on the NHS if you ask you GP nicely. Not just the awful passion killer white ones ethier, you can get the Scholl black hold ups even, which wouldnt look out of place in the bedroom if you know what i mean. In fact i think you can ask for any sort of medical compression garment.

Also i posted about Elemental nutrition drinks you can also ask for on the NHS.

I havnt sadly tried one but i do wear the leg stockings in winter.

Can you tell me, on bad Potsie days the nausea and migraines are what kill me. The thought of having a binder around my mid drift is possibly the worth thing i can imagine, but once its on can anyone tell me if it does then begin to releave their nausea and bloating symptoms in some way. If someone can say yes it did then i should really consider buying one.

All my life even going back to PE lessons at school to walking fast for a distance now a days, i always use to get like this popping, prickaling itchy feeling on the backs of my thighs and bum, i always pressumed it was just blood circulation but it sound like the exercise anaphylaxis in this article to me. Interesting.

I dont have a one, but after 3 endoscopies i have been told mine is a bit "floppy" as you all probably know, anyway alot of people with EDS have Hiatis Hernias becuase if the stretchyness of the muscle that can not tighten enough and allows the reflux back up the esophagus.

That is very interesting, i am having my second steriod injection next month so will be able to gauge it more.

I have a feeling i too could have autoimmune issues going on here, I am lucky in that my GP is sending me to an Immunologist, however my frined does not have POTs but fibro, her Drs is not so helpful.

Kluesky, if presented in a situation trying to get you GP give you a referral to an Immunologist, what is the best way to ask do you think for her? Its interesting that a normal ANA can be found yet so much further testing could need to be done. I just know for some its a battle getting infront of the right people

I have had steroid injections for my Migraine, it didnt effect my BP or heart rate so i guess for me it wasnt a bad experience, but thats not the same as IV i guess.

Im interested to know how do you hope it will help you?

My GP made a veey good point to me aswell that even if we did recognise a mutation in our DNA, to have your insurer's pay for treatment or possible further investigation is another battle, but what do we have to lose, we have to try.

Lol can you imagine if they searched our handbags now days if we went into a club on a night out, they would find lots of pills, but not of the kind bouncers would expect

Just a quick question Issie

I read an old post about olive leaf helping with Candida, Im struggling and Nystatin is hurting my tummy despite being used on young born babies, did you use the olive leaf as capsules or is it a herb you can boil up? Also have you tried boric acid for fungal type issues, been told can be helpful.

Have good eveing or is it day time in the US?