Mary P

A sister called me yesterday to see how the vivit to the N had gone. Knowing this sister as I do, I wasn't about to go into any details but said that I left feeling very upset, that it was a waste of time and that I had to fight back tears as I left. Her response: "You know there are a lot of people out there who are a lot worse off than you". That stung more than having nothing resolved with the N. I said to her, "I once said to a good friend exactly what you just said to me. She answered, "You do not need to think that way. You are in very poor health and suffer as much as anyone else so don't put yourself down this way". My sister had no response but changed the subject. mary p

I lost a lot of hair when I was on Midodrine....10mg/3xday. I also had annoying all over chills. My present N wondered why I was taking so much each day but said no more other than to bring in a record of BP over last 3 years. Meanwhile, I gradually cut back to 5 mg/2x day and don't really feel any better/worse than on the higher dosage. Also there is no more hair loss or chills so that's a bonus. When I took 4 sheets of BPs to him 4 days ago, he said, "You really do have mostly low BPs but said no more. He didn't say anything when I mentionesd that I'd cut back on M because of what he'd said on my previous visit so I'll just play it by ear and see what happens. I'm quite fine without the hair loss and the chills. mary p

Thank you for your responses. They point out how each of us is so different in what does or doesn't help. I had the final bricks removed and I do believe things are better for me now. I have no more sore back before getting up for the day and I don't get up as much during the night. These are a bonus for sure. mary p

Hello to all: Just wondering if anyone has truly noticed a difference if you have raised the head of your bed. I used to have mine raised by about 5 inches and all that did was cause back pain. I had it changed to only 2 inches but still my head is rarely comfortable. Perhaps this is because of neck instability. At any rate I slept in a different bed last night, one where the head wasn't raised at all, and I had the best sleep in several years. However, the same old head/neck problem arose when I lay down for a nap in my own bed this p.m. and now I'm wondering if I'd be better off having those final 2 blocks removed. My new N suggested that I probably didn't need the 30mg/day Midodrine that I'd been taking for about 1 1/2 years, so over the past 5 months I've slowly cut that back to 10mg/day and I don't find any difference in so far as BP/HR goes. I know this because I've kept track of my BP/HR 2x/day for 3 1/2 years. He has asked that I take a copy of several days on my next visit. Now I'm wondering if I can also get rid of the bricks that raise the head of my bed. Has anyone here had a similar problem? Any advice would be most welcome. Thank you for this. Mary P

So sorry to hear about your scary episode, kayjay. I hope your GP will be able to direct you to the specialist who will help you get to the bottom of this....if she/he can't do this themself. Wishing you the best and God Bless. Mary P

Dizziness for me has all to do with movement...moving too fast, getting up too quickly, turning without thinking about how slowly and carefully I need to make every move, etc. Even then there are many times when I can't be careful enough. When turning in bed, I have to hold my head in my hands and roll very slowly and carefully, making sure that my head turns the same as my body. I'm able to do this because I sleep very poorly and am always aware when I want to turn. When I'm walking I can't just look to one side or another. I have to turn my entire body in order to avoid a dizzy episode. I have to pay extra attention to turning corners when going into a room or around a street corner, etc. Dizziness also means nausea for me and I feel it might be the same for many of the members of this forun. I take a gravol and lie down, without moving a spec, for 20 - 30 minutes. I told this to a DINET friend and she also finds this quite helpful. I won't take any more than 1 gravol a day. This is an over-the-counter med and it may be called something else in other countries. I live in Canada.

My new N was going to have my licence taken from me when I mentioned that I had fainted a month earlier. He said, "i'm surprised that someone hasn't already done this". I begged him not to do this, saying that I drove only about 3 minutes to church but only if I was feeling really good. He hesitated but then said okay. I want to be able to make that decision myself and have it imposed on me. I saw that done to others and it was devastating to them, that last little bit of independence and freedom was gone. Without being able to have any say whatsoever, our failing health has imposed far too many restrictions and limitations on our lives. I want to maintain control wherever I can. Like you, Nina, I've never fainted while sitting, never even felt like I might. Thanks for this bit of wisdom. I see the N on July 12 and I'll bet he'll bring it up so I must tell him what you said. At any rate I haven't fainted again. Mary P

I am fair skinned. I fainted even as a young child, probably 8-9 yrs old. I have a form of spina bifida, the kind that allows me to still walk. I have always lacked 'normal' physical balance and couldn't dance without getting quite dizzy. My dad had problems similar to mine and he also suffered a couple of nervous breakdowns. A lot of my sibs have low blood pressure but not the other problems I have. I grew up on a farm and breathed in a lot of harmful, perhaps carcinogenic chemicals....but didn't know it at the time. I don't think there is any 1,2,3 etc. things that point directly to the cause of our problems. The 4th N I saw in Feb. 2010 said. "You are a puzzle". Perhaps POTS and PUZZLE are synonymous. Mary P

And about you. . . How are you doing? We "caregivers" don't have much of a chance to converse with one another on this forum but I thought I might take advantage of this post to ask you about yourself. I wish you all the best. Beverly When I was diagnosed with Parkinsons, I attended a wonderful support group. The caregivers met separately for a while and found this most worthwhile. Perhaps it could be arranged that all the caregivers on this forum find a way to share concerns, etc. As it turned out, I didn't have Parkinsons but loved the group. All the best. Mary P

I'vr had very little use of my arms since Jan., 2007. I was spreading ice melter on a sidewalk when they suddenly just wouldn't work anymore. Then I found out that I can't lift much, not even a catalogue. I find it very difficult to make a bed or fold large items. I can't reach up for anything. I couldn't help decorate the Christmas tree...and on...etc. I always get chest pains and short of breath. Doing dishes wears me out completely but I have to keep trying to do as much as possible. The first N I saw in Dec., 07, recommended an MIGB test which checks for denervation of nerves to the heart, but his hospital didn't do this test. No one I have seen since has ever taken me seriously so I have asked to see a Cardiologist and hope I get some results. Between legs and arms our lives can be so very limited. If the C won't order one, and I know it's done at her hospital, I'll have to ask my GP to order it. I really do feel that it should point to something so I can get the help I need. Simmy, I hope you haven't had another of those terrible days when your HR went so high. That must be so terribly scary. Mary P

I have learned not to bend over very far at all or I will fall forward and heaven only knows what can happen. I learned this when I was looking at some items in the bottom shelf of a store. I was able to grab a metal post and prevent a complete fall and perhaps a break or a lot of bruising. Even when I'm on the floor I have to be careful not to fall forward and wind up flat on my face. So much of life seems to be a balancing act of some sort. Mary P

My first thought was exactly what potsgirl said. Keeping that in mind I must say that it was the 4th Neurologist I saw who cared and gave me hopes of some sort of help. I'll see him on July 12th. He is a N of movement disorders and we surely do have a lot of problems with movement. Another thing I've learned to do is keep a close eye on blood and urine tests, watching closely for anything indicated with 'hi' or 'lo'. My GP pays no attention to these so I've had to do research on these areas myself and then present this info to the N. I have some interesting info for my next appointment and will post something if I'm correct. Mary P

First I must say that I love your name "nowwhat'. I wonder if anyone on this forum has the name 'whatsnext'. Last year I was diagnosed with insomnia. I knew this and was looking for help so was told I should see a sleep psychologist. Instead my GP sent me to a psychiatrist. I wasn't pleased but thought, 'what the heck. I'll give it a shot'. I walked into a huge room filled with teenagers filling out forms. I was greatly alarmed and distressed and wondered, 'are there really so many young people in need of a psychiatrist's help?' I told the gal in charge that I was supposed to see a sleep psychologist. She assured me that I didn't need to be there and the psychiatrists there didn't deal with insomnia. I told my GP about this but still I wondered if it was in my file that I needed the help of a psychiatrist. I was told that this follows you wherever you go and I'm now with a new doctor in another city. I've said nothing to her. I have a brother who was told for years that all he needed was to see a psychiatrist and he resisted for years, knowing that his problems were physical. Finally he said, 'what the heck, why not go and make someone happy!' The psychiatrist told him he didn't need to be there and my brother was ecstatic because he had proved the doctors wrong. Eventually he was diagnosed with Parkinsons and he's doing wonderfully well with the right help. Mary P

I got diarrhea when taking mestinon for OH, but I don't think this is a common side effect. I've had diarrhea with other meds so I think this is a 'me' reaction. Best of luck if you do take it, David. Mary P

Missy, I'm guessing that you live in the USA. I do know that pharmacies here in Canada are stopping delivery drugs to us, another 'blow' to patients caught up in this battle between the gov't and pharmacies. Hope this doesn't happen to you or anyone else. I'm wondering if I'll have to buy midodrine online. I do know that it is still being manufactured. Cat Lady, I meant to say thank you for your response as well. Someone interrupted as I was checking my original post and I forgot. Hoping to hear from you as to the name of your substitute for midodrine. I can't find a substitute online and the pharmacist didn't know. She said, "I'm not a doctor." the pharmacist in the town where I used to live would have done the 'leg work' for me. Perhaps they're targeting the drugs that are not that commonly used. Still, they're so important to those of us who do need them. I was saying to a friend a little while ago, "They wouldn't dare cancel out on an important cancer drug". Mary

Thanks for your replies. Simmy, yes the disruption to supplies here in Canada is because of a major dispute betwee our gov't, the drug companies and the pharmacies. So what's happening it seems is that the drug companies aren't sending some drugs to the pharmacies, the pharmacies are stopping deliveries to shut-ins, and cutting back on store hours. The patients are the ones who suffer. The gov't wants the cost of generic drugs. The drug companies and pharmacies will lose a lot of $ this way. I'd been taking 30 mg/midodrine/daily for 2 1/2 years until last month. At that time I was given amatine. Simmy, you mentioned desmopressiom as a substitute. Cat KLady, you didn't give a name for the substitute you got. Could you take a moment and post this please. I woprry about what will happen to me as time goes on and i have no med whatsoever. I've been thinking that I may have to take this to a major TV news station. Mary

Good morning to all, I haven't been able to shop or stand in line or stand at church for 3 years now.,,,or talk to anyone I may meet when I go for a short walk, etc, etc. I have to sit on a huge chair to work at the kitchen counter. I have on 2 occasions gone to a store when I'm being pushed in a transport chair. I have to have this when I go to a hospital as well. What do you take for the orthostatic hypotension? I've taken Apo-Midodrine or Apo-Amatine but the drug company no longer makes them available to Canadians. I have only a few left and worry about what will happen to me when I no longer have any? Blood pooling in legs is certainly a common symptom. There are more but my mind won't let me think sbout what they are. I think that decline of memory is another. The N asked me in Feb, 2010 if my memory was being effected. It is. mary

Hi Mirry, The only difference I have noticed is that NMH (when I stand for a while) can cause me to feel I'm going to faint quicker than OH does (when I get up and move too fast).... or maybe not. I don't really know. I never let myself faint because I lie down wherever I am. I think the nausea happens faster and BP drops quicker with NMH. I've only once been able to grab the BP cuff to take any readings with NMH. I need to wear it all the time so I can use it when needed...under such episodes. Of course, this is impossible. The thing is whatever the case, this crazy ANS dysfunction really disrupts our lives. Still, I feel I'm so much better off than most people on this forum. Take care and I hope someone can answer your question. Mary P

When I went to pharm to have my midodrine refilled last month, I was told there was no more. The pharmacist couldn't or wouldn't say why. She did offer to substitute it for amatine and got my GP's approval. Today I couldn't get either brand or generic today and no more will be available. The pharm has to phone my doc to ask what else she'd recommend. The thing is my doc knows nothing about my condition and has always relied on the N to do everything. I began to ask the pharm if she thpought this had something to do with the 'war' going on between the Canadian gov't and the pharmacies and generic drug makers over the price of generic drugs, but before I could even finish my question, she said, "Yes, This has been going on for 5 or 6 weeks now". Is anyone here taking another drug similar to midodrine or amatine? In the meantime I've given the pharm the name of the N so she can contact him. I'd appreciate any help at all. Thank you for this. mary p

I have both OH and NMH as well but no N has ever been able to tell me why. In the initial stage I know, or think I know, which is happening to me. I think from what has happened over the past years, that one can follow the other. Whatever the case both OH and NMH force me to lie down till the episode passes, then get up and move slowly and with great caution. A man was here this a.m. to check that the fire alarm was working. It made me think that I could never move fast enough to get out of this condo if there were to be an emergency and my 2 contacts weren't here in the building. Mary P

Absolutely, Terry, major lack of balance, +++, and, of course, along with this, nausea. I fell and 'smashed the back of my head on ice in 1982 and have had balance issues since that time. They have steadily become worse and worse over the years. I have to be really careful of every movement I make, even in bed. When I walk I have to look straight ahead and with my eyes down a bit. I don't dare look sideways . I have to turn myself around if I want to look to the left or right. I can't lie on the back of my head because of the pain and loss of balance this will cause. I told this to all the Ns I've seen, and my own MD for years before I ever saw a N but no one paid any attention. I have a walker for outdoors but now need a smaller type for indoors as well. It's my security blanket. I'm glad you know of cerebellar ataxis and thank you so much for responding. This new N is a specialist in movement disorders. I waited a year to see him but he seems to be on the right track. Mary P

I've had neck/spine problems for years ++. I was diagnosed with a type of spina bifida years +++ ago. I saw 3 neurologists who wouldn't even listen to me in this regard. They seem to have some sort of mindset when they hear our symptoms and can't think 'outside the box'. I saw a 4th N last month and I do believe he listened because he has ordered an MRI of my head and neck. A previous N ordered an MRI of my head only, so Mirry, I don't imagine your neck was included in your MRI. This 4th N diagnosed Autonomc dysfuntion with OH but with a something new added, cerebellar ataxis. Has anyone else been diagnosed with this or has anyone else heard of this? It seems there is always something new to research.

Mirry, Thank you for sharing this. I wonder if it would help our families and friends believe us if we were to send these sites to them. Somehow I doubt that some of these people will never believe. I wish the meds that helped had been mentioned. Hooray for the knowledgeabe doctrs at Vanderbilt. Mary P

This is a great idea, Flop. I surely do need more blood flowing to my brain. However, I can't drink anything cold so this means I can't expect any improvement in my brain function. Oh well, nothing else is improving either. Mary P