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Valentine

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  1. Dear Anyone Feeling rather anxious at present have recently started on Midodrine only in th 2.5mg stage have not experienced any great relief at present which my Dr told me I would not on this dose but i am trying to find out is what sort of symptoms have any fellow suffer's experienced while first taking the above. I have had not had any high blood pressure but had fainty feelings fast and slow heart rate, nauseous etc Thanking anyone in advance that may be or have been on Midodrine ValentineXX
  2. Hi I joined forum not so long ago and am having many symptoms again in recent weeks after having an "ok" spell. It has been so helpful to come and read the stories of the many people on this site and how bravelly you all cope. I have been getting a little scared of late!! probably my nature!! I have been having terrible muscle spasms in the head particurly on the left side where i have suffered terrible migraines in the past. Could i ask if for example when typing, knitting etc does this bring on pre-syncope because this seems to occur with me and muscles really ache!! could this be because i am pushing myself to far and if so are there and muscle exercises that would help? I currently take Fludrocortisone, Co-dydramol, 2mg of diazepam to ease the muscle spasms. My shoulders and front of upper neck feels like concrete. Would be so grateful for any advice. Thank you and take care to you all Valentine
  3. Hi Your story was interesting an inspiring regarding your children. I was lucky enough to have children before my POTS diagnosis. But thinking back i think i have probably had it for a long time. You talk of bad times earlier on - could you highlight some of the areas where things were particularly hard. Experiencing pain in the muscles is a great issue for many with sickness, migraines etc. Do you think it is possible to ride the storm and things can become a little better. Some days it seems so hard to move your aching limbs about - having a rough time at the moment and my family just dont seem to understand. Take care Valentine
  4. Hi I would just like to know as many talk of gastrointestinal problems which, i have had for many years but did not realise what they were!!! Now that i have a POTS diagnosis could i ask does anyone have any tips for eating? I have managed "just about" to carry on working even though i have been off at one point for 4 months. I have a desk job which to a point helps and i was just about coping again until a big flare up about a month ago. Food seems to be a real problem and also could i say when i move or get up or even turn head get a giddiness you might think yes that is a big problem for all but a blood pressure drop to me feels more like dropping in a lift but this is more like some has a hand on the nerve that travels up to the ear and squeezes it has anyone also had this kind of symptom. Take care and many thanks for your time. Valentine
  5. Hi I worry too but i certainly think you have a good point as if you have a pain normally you may think about it for a while but when you become occupied, you will eventually forget about it and the anxiety will go naturally. However, when you suffer with something like POTS the anxiety definitely comes first - so almost anything will latch on to this feeling. You certainly become very aware of yourself. Kind regards Valentine
  6. Hi I too have burning in feet sometimes feels like travelling down leg and hands also, actually all sorts of places on and off. Goes away by itself. I wake quite often with hands completely numb but goes away by itself. Do you ever wake with a stiff neck. This happens to me quite often. Muscles tend to tense up easy. Many thanks Valentine
  7. Hello to everyone I have recently joined this site and what a relief to finally chat with other sufferers. Is it quite common to develop POTS over many years with many systemic symptoms which in time seem to fit together like a jigsaw puzzle. I get a tremendous amount of stiffness that has become progressive over the years leading up to the POTS diagnosis. Mornings are bad when getting out of bed (feel like Hermon Munster) - as i mentioned in an earlier post real problem with neck area and horendous migraines which i have had for about 10 years now. Nerve pain travelling all through the muscles really. Can i ask does excerise help? and if so what is a good program to use and has anyone benefited from this long term. Also has dry eyes been a problem for anyone Kind regards take care Valentine
  8. I am new to this kind of communication and have never yet spoke to anyone else with POTS - but i am so glad to have found somewhere with information that is helpful. My brief story: I was diagnosed with POTS officially 12 months ago (Idiopathoic kind) by Professor Mathias who my local neurologist referred me to. Without boring anyone too much i would very much like to ask a couple of questions without boring anyone too much. I have probably had this most of my life - as my blood pressure has always been on the low side. I had suffered with dry eyes even pancreatic insufficiency which required supplements to help me digest my food. My blood pressure always seems to be on the low side and am taking Fludrocortisone at the moment. Is it quite norma to have extreme stiffness - i suffer a great deal with stiffness in the neck area with what appears like muscle spasms, even moving my arm out to the side sometimes causes terrible pain. There always seems to be a constant burning in my shoulders. Has anyone suffered this kind of thing. Pressure also on my ears. This has all been getting worse over the last few years. It would be great to here others views on these issues. My user name came from my lovely british blue cat by the way. So happy to be here at last!!!! Valentine
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