dancer65

I feel exactly the same ,I try to accept the situation but the lack of understanding why these symptoms appear drives me nuts especially when you are doing all you are advised too . My first day off work was spent in bed with a migraine hubby cleaned the house and prepared loads of food for visitors, I miss having the energy to do things together and feel really guilty too Hoping we all have better days in 2017 !

Merry Christmas everyone ! wishing you all well to get through the festivities and hopefully enjoy !

I was told to keep my florinef in the fridge I am taking3x0.1 mg a day. In the beginning I suffered with headaches and terrible lower backache but I stuck with it as I decided those side effects were better than not being able to stand up due to dizziness. It took about three months before those side effects subsided I still get migraines and headaches which I have had for many years but the side effect headache felt different to my normal problem if that makes sense. I have been on florinef for about a year now it has taken a little experimenting to get the right dose for me but my BP has risen from 60 /40 to around 100/70 . On occasion I have forgotten my tablets and taken them lateI feel really ill the following day and wiped out for the rest of the week, I now set my phone alarm to remind me I am sure the florinef has helped me return to part time work, I still struggle with all the other symptoms but at least I can stand up without falling over I hope this helps you I did see an improvement in the first week I took it, for me it just took time for my body to adjust Good luck !

I found it does relieve the pain, but i have the higher codeine dose on prescription it affects my IBS mainly with constipation and cramp.If I do need to take it I always use a mild lacitive wich helps a bit. It always makes me really tired and lethargic

I have been following your posts glad to hear you got some answers.Best wishes to all of you hope the girls are starting to feel better, took me a while to get over TTT as well

It takes me about an hour to get going in the morning, some mornings can't even get myself organised at all ! However 10 till 2 is usually my best time then I just get more fatigued as the day goes on.

I don't want to get out of bed and can't wait to get back in it in the winter. It is hard to get motivated but I find a short walk helps to energise me, or even a bit of exercise

Hi and welcome

i have had this problem not from EDS but another immune problem. I found almond oil massaged in twice a day really helps to strengthen the nails, it takes a while to see results, of course not ok if you have allergy to nuts,

Thank you to all of you for you replies, helpful suggestions and support, it is so nice to know that I am not the only one experience this panic during an attack, it makes me feel may be I am not totally neurotic ! I don't know what kind of Pots I have, we don't get the extent of tests here in the uk, I do know I have a drop in Bp when standing and during my TTT so I am taking florinef which has helped the dizziness. And raised my BP from 66 /45 on a normal day to about 90/ 60 . I did post a short while ago about a pots attack (no panic that time ) and Sarah and ginseng suggested mcad however Dr here not keen to refere me to specialist for testing. Interestingly I suffer with Alopecia and mast cells have been found to play a part in the auto immune disease, I also suffer from food and environmental allergies, I often have a swollen face, rashes and asthma . Can you have it with other forms of POtS beside hyper . I am desperately trying to gather as much information together as I can to try to pusuade my surgery to refer me to a POTS specialist , I feel the need to know why these things are happening an exclamation of you its your POTS is just not enough any more! Understanding what's going on gives me the opportunity tontry to take as much control and help myself as much as I can. tHank you again for listening best wishes to you all:) sorry if I have repeated myself from previous posts brain fog and memory not good !

Do any of experience uncontrolable panic during a POTS attack? Last week I had an attack during my recall mammogram whilst in the waiting room. I had had my second scan, the room was boiling and they had found something on the scan so I was waiting to see the the Dr. I sat quietly on my own in the corner of the busy waiting room as symptoms started to emerge, sweating shaking etc I was fighting the urge to leave as I felt very anxious and kept telling myself not to over react.! Another patient came over to see if I was ok so I explained I just needed to be alone as I had a condition, I know she was being kind but she kept trying to get to me move to sit and talk to the others. I kept repeating to her I wished to be alone to cope and thanked for her kindness, sadly she didn't listen, I lost concentration of trying to control my emotions! The next thing I ran out the room I couldn't find my way out to my husband who was waiting in the other waiting room. That is the last thing I remember, I didn't faint apparently as I was shouting, sobbing begging my husband to take me home, my knees buckled as he held me and the body tremors started. I caused quite a disturbance I believe. I normally have low BP but when they took it it was 158 90 and HR 138, my husband said I had been laying for at least 15 mins when they did that. I am so embarrassed about the shouting and crying , this episode has left me feeling really down and stupid. My husband said he had never seen me in such panic, I know it upset him to see me that way. Please can you share any experiences that you have had, is this a normal or am I just highly strung, over the top !!? I may add I was starting with a cold and tonsillitis I ended up in ER on Friday with an asthma attack so it was quite a week! I know after fainting on My TTT I had a similar panic and managed to get out of the straps and I also hit the nurse, another embarrassing moment! Thank you

I have used coconut oil both externally for skin problems and occasionally cooking for many years, I haven't had a problem with it that I know of. I am sorry you feeling ill again, it's very frustrating to go backwards. I seem to have a couple of good days then feel so fatigued I can't function this can last a few weeks then I seem to improve again, I am slowly learning to go with the flow and accept the bad days better than I use to" I think Sarah made a valid point, about the dandilions.

Many thanks to both of you for taking the time to reply and clarifying it for me, one less thing to worry about ! Thak you for the good luck wishes I am keeping my fingers crossed all is ok

Hi sorry to hear you are going through this. I can't comment on the neuropathy but I do know alopecia (hair loss) and sjograns both auto immune are often seen together. Sorry I can't be of more help but wish you luck

I received a letter yesterday to confirm I have to more investigations on tuesday after having a routine Mammogramm. I rang to tell them I have POTS, of course the nurse had never heard of it! After readaing my notes she said I may need a biopsy and to take any information I have with me. After looking online I could only find information on POTS and general anaethestic not on local,does anyone have a link that would give me any info that I could take with me? Am I right in thinking it is to do with addrenalin and epi or maybe local is not a problem with POTS? I have not had local anaesthetic for about 6 years but at the dentistic I always need at least 2 injections before it numbs me. Thanking you in advance Hoping you all having better days

Hope all goes well or went well with your appointment

Sue I am really sorry you are feeling this way, I think it is very difficult when you have always put on a brave face as people really have no idea what you are going through. I don't think you are being negative at all, having friends family and fun is what we all take for granted until it is not easy any more. I don't have any magical answers I am afraid. I do think from my own experience that once kids get into late teens and twenties they just get so involved in their own lives, socialising, dating work etc that they don't mean to forget to contact you but they are cramming so much into their lives time just passes by, however when there is a hiccup and then they are on the phone! I truly think they are all like it, just when you are not well it may seem more profound maybe ? My son does come home every few months but since he is a more serious relationship I have gently had to hint! The last 8 years have seen a slow decline in my social life, I just don't have the energy left after working. I do very occassionly have friends over for a light lunch, or meet at a café as I find evenings just don't work for me and I have the problem that eating a restaurant meal exasperates symptoms. Although I don't see these friends very often I do txt, e mail and call every month to keep the friendship going, I feel very lucky that they are ok with this sort of friendship. I have lost two close friends because they were offended I couldn't attend their wedding or party, I just try to hold onto the fact that I still have a dear friend who has always been there for me in times of need and my husband who I think deserves a medal. Out of my whole family I only see my youngest son and Mum so I understand the hurt you are feeling and yes it hurts! Big hugs!

this is wonderful news

Good luck tomorrow!

Hi and welcome!

Yes I have drop in BP and rise in HR as I stand. I have found Florinef has helped control the BP drop to a certain degree and my dizziness is much less severe, I use to loose my balance when I stood up most of the time, it happens less frequently now, thankfully.

Thank you to you both for taking the time to answer. Sarah, yes Mum is pleased to be with me, we are very close and she had breast cancer last year but all is well now, however it has taken its toll on her mentally, her memory mainly and physically a big decline. I hope taking over the burden of paperwork and chores will give her time to enjoy her life more. My husband really supports me with her too so I am very lucky. I have been drinking coffee when my BP was low as it is suppose to up the BP but I mainly drink water and lots of it! I think I will cut it out completely and see if that helps. I am not on a beta blocker, only a consultant can prescribe that I believe in the UK, I don't have a POTS Dr I am only with my GP, I think my surgery is short of money as he is very reluctant to refere me as I have made improvements in the last year form being unable to do anything but sit down to back to work .I suppose I just want more as we all do! I did contact a Dr in London for a private appointment but once I start on that path I will have to pay for all meds and tests, I cant afford it, On Friday my HR was about 103 t0 125, BP sitting at about 100/66 I took it regularly, so I gave myself a chilled afternoon yesterday. gjensen I will look into the clonidine, thank you for giving me hope that these can become less frequent ! The red and hands and shoulders happen later on in the day after one of these surges and it lasts for hours, weird. Wishing you both well

I haven't posted here in a while life has been very challenging with moving my elderly Mum in next door to us so I can take care of her. My Dr has increased my florinef to 0,3 to help with low BP, dizziness and fatigue, My BP has improved and the dizziness has too, vision problems and fatigue not so much! The last week I have had three attacks,one whist teaching, adrenalin I presume. I felt really light headed ,hot and fled the studio, then the chest and arm pains started followed by uncontrollable body tremors this lasted about 40 mins. This episode obviously has unnerved me, I was thankfully teaching adults at the time but I have now had to arrange for an adult to be present at all times when I am teaching children. I have already had to give up some of my work as I really cant cope physically and as the evening of teaching progresses so does my brain fog and the ability to remember the exercise I just set for the kids, my mind just goes blank. I am also having burning sensations on my hands and top of my shoulders which goes really red and itches like crazy. I am also experiencing excessive sweating numerous times a day for no reason, not menopausal as it is different feeling! I would be grateful for any input of experiences can these attacks be prevented? Can they reduce over time? Wishing you all well and thank you!

I can relate to all these posts some days I just cant get my act together at all! I often say a sentence that makes no sense at all and mix up the syllables it makes me feel pretty stupid!

I have this problem too. I have hip bursitis , tendonosis, inflamed insertion of oblique muscle, damaged shoulder tendon and my all my muscle hurt constantly. I was told there was nothing really that would help and it was part of POTS they didn't understand. I have found relief from using infra red lamp especially for the coat hanger pain and headaches which seems to come from either my sinus or from my base of the skull. They can be bought quite reasonably online. Of course I would check with your Dr this is ok to use.