posted
I think I have a form of dysautonomia and want to know anyone's experience with Midodrine as I do not want to take Florinef. I feel dizzy when standing(although have never passed out)and sometimes have tacchycardia especially when I take a hot shower or go up the stairs.
In the morning when I first wake up in bed I feel mentally clear, then after moving around and if I stand for a while my brain feels foggy, I get very bad nerve pains on my scalp and poor memory/concentration. My symptoms improve after lying down for about 15 min, but I can't just lay down the whole day!
Very frustrated because I know this is something that will never be cured. At first going into treatment I had a positive attitude becuase I believed I could be cured, now this happens and feel doomed. Am very depressed. I used to be a very active person, ran several miles a week, exercise was a big part of my life which I enjoyed, now am no longer able.
If anyone has any positive experiences please let me know, don't really want to hear anything negative right now as it will make me feel even lower. Already know about the salt and avoiding hot showers,etc. I've done my reading. Posts: 25 | From Chicago | Registered: Apr 2006
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You do sound depressed. Do you have a support system? Don't be afraid to use them when you feel down. If you have been reading you probably know how lyme messes up your neurotransmitters and can make you feel depressed, aside from dealing with the social and lifestyle and physical changes that Lyme can cause itself.
I read some of your past posts. You have to remember that you have not been getting treatment very long and that you will NOT be like this forever. You have to have hope and keep a positive attitude and you will get better. I have been lurking here for a long time and have read some very, very discouraging posts. But most people do get better with treatment. I am overall better since my treatment began. Many go on with their lives and get so much better they forget about lyme disease and don't come back to this forum. I know I will be better and it just takes a while to learn that this is not a quick process. It is easy to get discouraged along the way when the results don't come as quickly as we want them to.
I know some people who had considerable difficulty with fainting and tachycardia spells and this DID improve with treatment, so don't say you will have this forever because you just don't know.
Sometimes it is neurally mediated hypotension or POTS or sometimes just a herx. But I know people with Lyme who have had diagnoses of POTS, NMH, or dysautonomia and there dizzy and tacchycardia symptoms did get better with longer term antibiotics. I can think of several people in the support group I attend that had a lot of actual fainting spells and dizziness and now this is better.
If there are medications that can help you regulate this so you don't pass out, or if you need a beta blocker to control your heart rate, you may want to consider it if its ok with your LLMD. I am sorry I don't know anything about the medicine you listed. I took Midrin but I don't know if its the same thing.
Have you had a tilt table test or a cardiac event monitor done? Then what, you say? Well sometimes these tests do help to document your difficulties and these could be helpful to your employer for disability purposes. It can also help to rule out serious arrythmias.
Chin up. Please read the Success stories. It will make you feel sooo much better.
-------------------- We have only this moment, sparkling like a star in our hand... and melting like a snowflake. Let us use it before it is too late. Posts: 221 | From the hills | Registered: Mar 2006
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WildCondor
Unregistered
posted
Why are you saying you will never be cured? Who is telling you this? It's not true. You can get better, it just takes time, and aggressive treatment. My hypotension is vastly improved! This DOES get better! keep fighting! Midodrine is used for neurally mediated Hypotension. The first line of treatment is typically Atenolol plus florinef. Why don't you want to try florinef? it is not a steroid like prednisone, it acts differently. It acts on the kidneys to help your body retain water and keep your blood pressure up. i took it for 2 years and it helped me very much. the Atenolol helps me the most!
Midodrine is also called ProAmatine, and I know that it can increase your blood pressure while lying down. Do you have both the blood pressure drop and the increased heart rate? Give it a try and see how you do. Remember it takes awhile for your body to adjust to the new medication so take it easy for the first few days as you adjust. best of luck! Hope it works! I have a link section on NMH on my page, check it out, it may be of some help, there are tips in there that help deal with the daily NMH issues.
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posted
Snowflake & wildcondor- thanks for the encouragement. I think I just need to stop reading things on the web for a while, but am just looking for hope, but only found devastating stories on the POTs website so it made me feel worse. It makes me feel at ease that some people's symptoms have gotten better with treament, so I hope and pray that this will happen to me as well. I haven't had children yet so I am just thinking of the future. Oh, and I did read the success stories, very helpful.
Will talk to the nurse tomorrow and ask about getting a tilt table test. Don't really want to try florinef because of all the bad side effects I have read about. I am very cautious about any meds I take since I had an extreme reaction to fluoroquinolones which I believe has done damage to my nervous system.
It's a sunny day, I think I will go for a walk.
Posts: 25 | From Chicago | Registered: Apr 2006
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Lola,
I was on midodrine a couple of years due to neurally mediated hypotention (near black outs when standing in line somewhere, getting up from a sitting position, etc.). I was prescribed it after getting a positive Tilt Table Test result.
Anyway, after two years of Lyme treatment, I was able to go off the midodrine.
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