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Rafiki

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Everything posted by Rafiki

  1. Jana, Sorry to hear about the possible RSD/CRPS diagnosis. Plead with your doctor to get you in as early as possible. Quick treatment is the key to going into possible remission. I was diagnosed with RSD in 2002 after spraining my left ankle. I tried many treatments and medications, but what I think helped the most was Topamax (neurontin only made me gain weight), nerve blocks, and PT. For about 2 years I was in pretty intensive pain, but I did go into remission and don't have any problems with pain now. Try and keep a positive attitude, some people do go into remission, but the stories you read on the web are very scary. People who stop having pain, also stop hanging out on the forums, so you don't hear about them. I take lots of B 12 as well as other B vitamins and when ever I need any surgery or invasive treatment, I have a nerve block done first to try and prevent it from coming back. I was diagnosed with POTS last summer, but found relief with Midodrine. I am now off all medication and my blood pressure has pretty much leveled out. My HR still goes crazy when I stand up, but I am functioning normally. No major problems now, even though a year ago I couldn't get out of bed. I am so thankful that I have come through both of these weird conditions and just want to encourage you to have hope. I have wondered if there was any link between the two conditions, but haven't found any. Take care and start all the possible treatments as soon as possible. Debbie
  2. Maisie, Hang in there. I had no problems at all until June and I became bed-ridden practically overnight. My heart-rate is about in the same range as yours and it was pretty scary. My blood pressure dropped more than 20 points as well which made me very dizzy. Midodrine helped with the blood pressure and some with the Heart rate. Today my heart rate still fluctuates dramatically and I get short of breath just walking around the house, but I am pretty much back to my normal lifestyle. I do have to rest a bit in the afternoons when possible, but I am working, driving, shopping, etc. I've modified things-Work from home some, don't shop all day, can't stand in long lines, etc, but I'm not in bed all day or in a wheelchair. When I feel my heart rate getting too fast or too slow I either sit down or move around. I don't worry about it though and I think that is the biggest help. Early on I was worried because I didn't know what was causing the high heartrate and if I was in danger. Then I was obsessing about it once I found out it was POTS. Now I know that although bothersome, it is not life-threatening (just life altering). I just make the necessary adjustments and try not to feel sorry for myself. I also try not to obsess over it. POTS varies from person to person and from season to season for each person. I wish you all the best as you begin this journey. Debbie
  3. I am 51 and developed POTS a few months ago. I was also diagnosed with NMH but the doctor said I probably had that since childhood. I have always had a tendency to faint but have only done so maybe once or twice a year since I was 10. I really never thought anything about it. But after an ear infection in June, I was never able to get out of bed. Every time I did I was on the verge of fainting. I am postmenopausal and although have had no common problems (no hot flashes, mood swings, etc) doctor said low hormone levels could have contributed to both the POTS and NMH. I have started HRT, but can not tell a difference. Debbie
  4. Right now my HR rate sitting is 47 and a few minutes ago when I stood and walked a few feet to the bathroom it went to 117. That is on midodrine. Resting HR usually hovers around 45-60 no symptoms except a strange feeling in my chest. It always goes up at least 30 beats upon standing and often doubles or triples with the main symptom being shortness of breath. Low blood pressure causes me the most problems but the midodrine really helps with that. My heart rate seems to stay the same whether or not my bp is high or low. Debbie
  5. I just flew from Birmingham to Dallas to London to Nairobi a total of 27 hours a few days ago. I was very nervous about making the trip but it went much better than I expected. I did fly economy (wasn't able to get an upgrade) and had an aisle seat. I wore compression hose, kept well hydrated, and took midodrine regularly. I also took two tylenol pm as soon as I got on the Dallas-London Segment and managed to sleep about 6 hours (very unusual for me). I got up and walked frequently and was very surprised how well I did. In fact I felt better then I normally do when I have flown this route before having POTS! Maybe it was all the prayer! I am just so happy to finally be back home with my husband and son. However I have found that the higher altitude here in Nairobi is really affecting me. My heart rate is going much higher than it was before from the 50ties while sitting to 120ties standing. It went to 140 when I went up the stairs in my house and that is high for me. I'm hoping I will adjust in a few days. The midodrine is keeping my blood pressure up so I am not feeling dizzy or faint, just short of breath. Debbiejava script:bbc_pop()
  6. I also get chest pain, tightness, and shortness of breath. My heart has been checked out thoroughly and is fine so I don't worry about it anymore. But in the beginning it was a bit scary (I've only had symptoms for 3-4 months). The pain has actually decreased, but I still get the tightness and shortness of breath.
  7. 1. Name-Debbie 2. Age-51 3. Dx- NCS, POTS, OI, MVP 4. Age at dx.- 51 5. Where you live- Kenya (currently in Birmingham, AL) 6. Symptoms at worst-Bedridden for 3 months, extreme dizziness, feeling like on verge of fainting every time I stand up, BP bottoms out when standing, hr increases 30-60 points standing, loss of balance, chest pain, short of breath, fatigue. Unable to stand more than 5-10 minutes. Unable to sit for 20 minutes. 7. Symptoms at best- Able to do normal activities for most of day with medication. Some breathlessness and lightheaded occasionally. BP and HR changes not as dramatic, occasional mild chest pain. Able to shop for an hour or so at a time. Able to sit for several hours or longer. 8. Medications/treatments, etc. that didn't work for you-florinef 9. Medications/treatments, etc., that do work for you-midodrine
  8. Supine my BP is usually 90ties/60ties (use to be 100/70-110/70). It varies a lot though sometimes dropping to 80ties over 50ties and sometimes 100/60. I'm not able to take BP standing at home, but in Dr. office it drops 20/10 points. Sitting it drops some, but since I've been on Midodrine the drop has not been as much sometimes staying the same. The weird thing is since I've been on the Midodrine my BP has not gone up and is even lower than usual many times yet I feel so much better. I can't tell any difference in the way I feel based on my BP readings. I think it is more how big the drop is or how great the HR goes up, but that is just my guess. I'm still too new to this. Debbie
  9. Thanks for your encouragement and the concern about the long plane ride. I've talked to the folks in charge of travel arrangements with our organization and I think what I will do is break up the trip by flying to Amsterdam and staying in a hotel for awhile (12-16 hours) then doing the next leg which is about 8 hours. I think that would be manageable. I looked into using my miles for an upgrade, but they also raise the price from 1100.00 (one way) to 4200.00 plus 20000 miles (one way). The difference between the two tickets would be my expense! That is ridiculous.
  10. My body temp normal runs 96.8 too and I'm frequently cold. As my son told me tonight as we walked outdoors into about 75 degree temp. and I said I was freezing "You are just a freak of nature!" (He said it lovingly!). I was cold long before disautonomia kicked in though. Debbie
  11. April, were you seen at the Kirklin Clinic? I just had an appointment with an endocrinologist in the ob/gyn clinic there. When they sent me the packet of forms to fill out the return address on the envelope said Infertility/Reproductive Clinic. Since I am 51 and post-menopausal I was a bit concerned I was going to the wrong place! However the doctor told me he sees about 5 patients a week with disautonomia and seemed to understand the condition pretty well. It is annoying though when you get test results back by telephone without an explanation. I hope you get some answers soon. Debbie
  12. As I have written I came to states from Kenya about 3 weeks ago after being unable to stand for more than a minute without getting very dizzy. I had spent several months in bed and doctors there were not sure what was wrong other than orthostatic intolerance. I had tried florinef in kenya without any improvement. After failing tilt table test 2 weeks ago, doctor put me on Midodrine 5mg. 3 x a day. There was some improvement but minor. A few days ago he increased it to 10 mg. and what a difference! For the first time in months I am able to stay out of bed, leave the house, go out to lunch, I even went to Walmart and shopped without the wheelchair for about 30 minutes yesterday. I did not start feeling faint until standing in line. It is truly amazing the difference. Two weeks ago I was trying to sit at table to play cards and couldn't even play one hand without having to go and lie down. Yesterday I played for several hours with no problems! For me it seems the Midodrine is a miracle drug! Hopefully I will be able to return to Kenya in a week or two and rejoin my husband and son. I must say though I am not looking forward to the 30 hour trip in economy class. On the trip over my employer paid for me and a nurse to come First Class but since I am supposed to be recovered before I go back, I do not think they will pay for First Class for the return trip! Debbie
  13. I don't know what we did before the internet! I became sick in June of this year, first with a viral infection but I just never recovered. Doctor ran tests but said it would just take awhile to get over the viral infection and I needed to just rest. I googled my main symptoms, fatigue, low blood pressure, and rapid heart rate and POTS came up. That led me to the DINET web site. I just knew that was what I had. I mentioned POTS/dysautonomia several times to several of the doctors I have seen over the past few months and finally last week I was diagnosed with NMS and POTS. The doctor has suggested many possible other conditions and by doing internet research on those I have been able to better discuss them and ask questions. For example my PCP diagnosed me with Chronic Fatigue Syndrome, but after I did research I did not believe I had that. Although I have some of the symptoms I don't have at least 4 of the six symptoms that are necessary. If I did not do the research myself, I would have accepted the PCP's dx and not kept searching for answers. I am all for Internet research! Debbie
  14. I just had this done today! The doctor spent a lot of time explaining everything as he showed me the picture of the eye. It was really nice not to be dilated! This was done in Alabama. Debbie
  15. I just started taking it 4 days ago and I don't think it is helping. My blood pressure seems to be the same although HR seems to be occasionally higher at resting therefore much higher upon standing. In general I am not feeling any better. I have a question about side effects. Every afternoon about 3 pm I have become very nauseous for several hours. This isn't listed as a common side effect and the wierd thing is that it occurs when it is time to take the 3rd dose of midodrine. It seems like any effects should have worn off by then and why wouldn't the nauseousness occur when I take the first dose? (I take at 7:00, 1 1:00 and then 3:00) I have yet to take the 3:00 dose because I feel so sick I just go to bed. Has anyone else had this effect? I'm not sure it is a side effect, but why else would I get sick each day and feel fine after a few hours? Debbie
  16. A lot did happen fast this week after the frustrating appointment on Monday. In fact when I left the cardiologist office I went in person to the Autonomic Disorder Clinic (in same building) and referred myself for an appt. There was a month wait, but after I told them my situation they promised to try and get me in quicker and I was able to get in on Friday. Meanwhile I was chatting to a friend in Kenya who used to be a nurse in Birmingham and she called her physician/friend and told him my story and he called me and told me to come right in! (that was Tuesday afternoon). He has been amazing. Has done lots of lab and set me up for a TTT at hospital (i still thought I had a month wait at other place). When they said it would be a week the PCP called them and had me in the very next day. I kept the appointment at Autonomic Disorder Clinic and they confirmed the diagnosis and treatment and gave me some additional info. I am glad it has gone so quick, the PCP is still looking at possible underlying causes but I think the possible tests are drawing to a close. Now I am just hoping for the midodrine to work. Day 3 and so far I can't tell any effect, except I get freezing cold. But heart rate still increases and BP is the same sitting and lying down. (Can't get a reading standing up). Thanks for the welcome here. It is nice to know there is a place where people understand and can help answer questions. Debbie
  17. I had the tilt table test on Thursday and although had normal woozy symptoms did not pass out until they gave me a nitro tablet, then out in a few seconds. I have now been diagnosed with Neuromediated Syncope and POTS as well as Orthostatic Hypotension. My supine BP is usually 100-110/70, unless I am at the doctors and this proved no exception. It started out at 140/90! After the test while I was recovering in the room it settled back to 100/65. The TTT was not bad, I was not sure what to expect after reading other's experiences. I am glad to have an official diagnosis and a beginning treatment plan. (Midridine, compression hose, fluid and salt). I just pray this takes care of the problem and I can return to Kenya to my husband and son! I also have to receive medical clearance from our mission board to return and they want to make sure that there is not a treatable underlying cause. I also had an echo, chest x-ray, EKG, stress test, and arteriogram this week and my heart is fine. A few weeks ago an echo showed pericardial effusion, but yesterday that did not show up on echo. I'm feeling a bit more hopeful, though I have to admit I would rather have something a little easier to treat and fix! While hospitalized a few weeks ago and with way too much time on my hands I decided to "pick" my own diagnosis. I was on a neurological website though and I soon discovered I did not want most of those conditions! Most of them began "a rare and fatal condition..." I was laughing so hard while doing this (I guess you had to be there). However I did find one condition that was intriguing. It is called Exploding Head Syndrome! Now that sounds absolutely horrible, but it merely means that you hear exploding noises which wake you up and it usually goes away on its own. I'm sure it would be bothersome, but much better than POTS! Sorry for rambling! Hope everyone has a good holiday weekend! Debbie
  18. I have tried several different BP machines but have not found one that is able to read my BP when standing, presumably since it falls so low. When taken in hospital nurse sometimes had a hard time taking it, but at other times the reading would be 80/50. Supiine BP is typically 100/70 or 90/65. Dr. said I probably wouldn't find one that would be able to read it while standing, but I see that many of you seem to be able to take yours at home. Does anyone have recommendations of a machine that will read low BP while standing? Thanks, Debbie
  19. I live in Kenya and recently returned to US (Birmingham, AL) to try and get to the bottom of all the weird problems I have been experiencing for the past 10 weeks. I posted in detail about a month ago, but basically following an upper respiratory infection then an ear infection a month later I have had continuous problems with severe fatigue, BP bottoming out and pulse increasing upon standing, and chest discomfort. I have been so dizzy and weak that I have been mainly flat on my back in bed or on couch since that is the only place I feel halfway good. My organization paid to fly me first class with a nurse from Kenya (a 29 hour trip) and I made the trip with only a couple of dizzy spells which resolved as soon as I could stretch out. Anyway, my first Dr. appointment included an echo where they found pericardial effusion (fluid around the heart). The PCP felt like it would explain my symptoms and I was excited to know I finally had an answer. Yesterday I went to the cardiologist. The nurse took my BP lying down (140/100) and standing (110/70). That is very high for me. While hospitalized in Nairobi it was consitently 100/70 supine and often 80/50 or even 70/0 standing. When the cardio came in he said my BP problems had resolved! He didn't want to start me on meds for high BP yet, but would recheck in a month. He also said the fluid around the heart was a non-issue and was not constricting the heart. He had no idea why I was feeling so bad and having chest pain. He said I needed to give it time, exercise, and not drink caffeine. It was all I could do not to cry and scream at the same time! I protested I don't have time (I'm trying to get back to Nairobi to my family), taking a shower feels like running a mile and I have to lie down to rest, and I don't drink caffeine in any form. He finally agreed to another test (arteriogram) to check the heart but when pressed about next step if nothing shows up, admitted to not knowing. When I asked him about dysautonomia he dismissed it and referred to one doctor's work in the area as "magic". All in all it was very frustrating. There is a Autonomic Center here in Birmingham and I went in person to book an appointment. I can't be seen until Sept. 18th, but when I explained the urgency they were very compassionate and agreed to try and work me in as soon as possible. I have a son in Nairobi who is a junior in high school and if I can not return by end of September, our mission board has said my husband and son will need to come to US to be with me. As much as I miss them, I do not want to disrupt Chris's school year. I guess this post is really venting because I'm so frustrated. There has been so many blood tests and all are fine. I don't know what else to do or what other direction to go in. If anyone has any advice I would appreciate it! I have been in the states for almost 2 weeks and have only left my mother's house to go to the doctors. I tried to go to Walmart once and lasted about 15 minutes and had to get back to a supine position. That is frustration when you live in a place where there is no place to shop and you come to the land of 24 hour shopping! Thanks, Debbie
  20. After reading many of the posts, it appears that for many of you your dysautonomia is secondary to another condition, but for others it is the primary diagnosis. I'm just wondering about that. For those of you that it is the primary diagnosis do you think that is accurate? Do you think something may have been missed? Just curious about numbers of people for whom it is a primary diagnosis. Does anyone have any idea? Debbie
  21. I'm new here and am trying to learn all I can about POTS and dsyautonomia. Two months ago I became sick with fever, sore throat, swollen glands, ear infection what I thought was a typical viral infection. After a week or so I did go to Doctor for ear infection and began antibiotics. A week later I was no better (fever and throat ok) but very fatigued and ears still a problem. I also realized that my blood pressure was dropping when ever I would stand and my pulse would jump from 60-65 to 120. I have had a multitude of tests done (blood, echo, EKG, EMG, Nerve conduction, Holter, MRI, etc) I just spent a week in hospital after fainting at neurologist's office and being out for several minutes. Most of the tests have come normal. Did show a reactivation of Epstein Barr and the MRI showed bilateral mastoiditis (infection of bone behind the ear). I have been put on Florinef and Cymbalta for about 2 weeks but no changes. I am also on IV Rocephen for the mastoiditis. My PCP wants to diagnose me with Orthostatic Intolerance and Chronic Fatigue Syndrome. I don't think I have CFS- I have no joint or muscle pain, no headaches, no fever or swollen glands (other than that first week), just fatigue. I am not sleepy or tired just exhausted after taking a shower or getting dressed. I am an American living in Nairobi, Kenya and have been very pleased with the medical care here. However they have just about reached the limit of what they are able to do and my mission organization is talking about flying me to the states for diagnosis/treatment. I would be in Birmingham, AL. I have a couple of questions One: Does anyone know of a good doctor in Birmingham? Two: If I go to someone who specializes in dsyautonomia will that tend to make them "settle" on a dsyautonomia diagnosis without trying to get at what is causing those symptoms? Three: Any tips for speeding up the process? I will be leaving my husband and son in Kenya and don't want to spend months in the states waiting for appointments. Thanks, Debbie
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