Rachel

I get those symptoms also. I know what you mean about eyes not shifting quickly enough. Sometimes I will turn to look at something on the other side of the room, and my brain will tell my eyes to move, but the movement is slow and delayed. During that second that it takes my eyes to move the whole room looks like it is spinning even though I'm still.

I get blurry vision from time to time, and it is just from dysautonomia. Sometimes my nervous system just can't keep up with focusing my eyes. It is especially hard if I am going back and forth between looking at something that is close and something that is far away (for example, crocheting while watching television). I try not to do that much anymore because my eyes can't keep up. Sometimes I will have blurry vision that lasts for up to two weeks, making reading almost impossible, but then my vision always goes back to normal.

I do get pain behind my eyes too. I have seen both a neurologist an eye doctor about this. It was determined that the pain was from migraines. I have had a full eye exam, but everything looked good. The eye doctor said that the vision problems and pain aren't from anything wrong with my eyes.

The autonomic nervous system controls so much, so when it isn't regulating properly you can get a whole host of different symptoms. Even if it doesn't seem to fit with POTS, it can go along with it under the umbrella term of dysautonomia.

Rachel

This is a documentary that DINET made a couple of years ago. We don't have any more copies of the DVD currently, but we can order some in the future if we have a volunteer who is willing and able to commit to addressing envelopes and mailing out the DVDs.

Rachel

Hi! I just want to say welcome back. I'm glad you're able to get on the forum again.

I hope that the tests you're having will give clear direction to your doctors.

Rachel

I'm sorry that midodrine hasn't been helping to relieve your symptoms. 120/80 is a good blood pressure, but 145/90 is too high.

Midodrine has been very helpful for me, but it didn't help my sister. It raised her blood pressure too much, gave her headaches, and did not give her any symptom relief.

I hope you will find another medication or treatment to be beneficial.

Rachel

I used a DisPouchable bag. http://dispouchables.com/site/html/gall_new.htm

It was easy enough for me to carry around the house. When I went out I would just put it on my lap in my wheelchair. I only had one liter of fluid to carry around, though, not two.

Would a tote bag be easier for you? You might be able to find a comfortable and easy to carry tote bag at a store.

Hope you find something that works well for you.

Rachel

Hi Lisa,

I'm so sorry that you're having almost daily migraines. That is really rough.

I tried Topomax last year, but it was really hard to get used to. I had to raise the dosage very slowly. It did help some, but eventually I tapered off in order to try a Amitriptyline. I found that Amitriptyline is much easier on my body. I don't have as many side effects. Actually, the only side effect for me is sleepiness. I take it an hour before I want to go to sleep.

I'm only on 30mg of Amitriptyline, which is a small dose. I tried going higher, but it caused pain behind my eyes (probably from increased pressure behind my eyes). I went back down to 30mg, which doesn't cause me pain, and I then went to the eye doctor to make sure that the pressure in my eyes wasn't too high. The pressure level was good, so I have stayed at 30mg since then.

I also take 950mg of magnesium every day, and that helps a little with migraine prevention.

I hope you can find something soon that gives you relief.

Rachel

Yes, the forum is visible to the public and to search engines. This isn't an option we can change. If you log out of the forum you will be able to scroll through topics and see what they look like to non-members. Non-members cannot see signatures, but they do see everything else. We encourage our members to be careful in what they post. Personal messages and emails between members are private, and cannot be seen by anyone else.

We often have people with dysautonomia come and read on the forum, but not join for many months. They come here to learn and gather information, and the forum is a helpful resource to them. It's not often that we have someone come here with ill intentions, but it can happen. The moderators work hard to keep this forum a safe place for all.

Even in places like facebook where you can control your privacy settings, it is important to remember that what you are placing on the internet could still potentially be viewed by the public. We probably all have friend's whose facebook accounts or email accounts were hacked. When someone guesses your password and gets into your account, they can read everything you have. Strong passwords are a necessary precaution.

It is not possible to change your username and delete your old screen name. Administrators can delete an account, but all of the posts and the original screen name will still be visible. It is possible for an admin to delete every post and topic under a member's name, however this is a very tedious and time consuming process, and it is something we only do in very exceptional cases (ie, if someone is being stalked or if their safety is seriously at risk).

If privacy is a big concern to you, the best option you have is to edit all of your posts by yourself. You can do this by clicking on the edit button underneath your posts. Remove all of the text from your post, and click to submit the modified post. After you have edited every post to be blank, you can send a personal message to the administration requesting that your account be deleted. After we delete your account, you may create a new account with a more private screen name.

Rachel

If you would like to start a support group in your area, you are welcome to post about it on the forum and invite those who may live nearby. Once you get a support group set up you can send us an email at staff(at)dinet(dot)org and we can add your group to the website listing if you'd like.

I hope you're able to find some local people and get a group together!

Rachel

Thanks for sharing about your experience, BellaMia. I hope that you will recover quickly from the procedure. Rest well.

Happy Mito Awareness Week!

Rachel

I had the Curlin 4000. It's the same one you have, just the older model. I used it around my laptop all the time and never had a problem. Sorry your computer is going wonky on you. I hope you can get it fixed.

Rachel

One more thing, I just went to an old poll that was set to "public" and then I logged out. When I wasn't signed in I was able to see the main poll question, but couldn't see any of the poll options for answers or votes cast. It looked the same as a "private" poll would for a non-member. So public and private doesn't make a difference for non-members; they can't see either poll. The only difference is for members - whether or not we see how each member cast his/her vote.

Rachel

Naomi, all members can see the poll results, even when it is set to private. If a poll is set to public then we see not only the results, but we also see what each member's vote was. For many polls it might not matter if it is public or private. However, if the poll is ever one on sensitive issues then members would likely want the poll to be privaite so that no one knows how they voted.

Rachel

Hi Naomi,

The time of 7:42am was referring to the most recent time a vote was received. When someone votes within a topic, the topic is automatically back up to the top of the forum page, and it the time for the most recent activity within the topic is updated. Because you had been the last one to write a post, your name showed up under the "last activity" column for that topic on the forum page. In most topics this would mean that you had actually posted at that time. However, in topics with polls this can mean that although you had been the author of the last written post, someone else had a more recent vote. So there's no need to worry about your account being hacked. It's just a confusing forum quirk.

Rachel

Naomi,

The time of 7:42am would have been referring to the most recent time a vote was received. When someone votes within a topic, the topic is automatically back up to the top of the forum page, and it the time for the most recent activity within the topic is updated.

Hope this makes sense!

Rachel

Julie, it is so good to hear from you! I had been wondering where you went. I'm so sorry about Mack's collapsing and your husband's accident. How terrible. I hope that your husband will continue to improve and regain some movement in his elbow.

That's great that Mack is at college and is doing well! I hope that the semester goes well for him and that he will excell in his classes.

Rachel

Is it possible that you don't have enough fiber? Or maybe you only need to go every 2 or 3 days? A persons bowel "schedule" can change over time. Mine has changed throughout the years. You never know what dysautonomia is going to do!

There are many of us on the forum who have been pregnant with POTS and/or orthostatic hypotension. You can do a search on the forum and find many topics on pregnancy that may provide you with some useful information.

Two years ago I was pregnant, and I took midodrine (15mg 3 times a day) throughout my pregnancy. Midodrine is a pregnancy class C drug because it has never been studied in human pregnancy. Though it hasn't been officially studied, it has never been reported to cause problems during pregnancy. The only reports of problems during pregnancy come from rat and rabbit studies. Midodrine caused reduced fetal weight. Keep in mind, though, that these animals were given approximately 10x the normal dose, plus they didn't need the medication in the first place.

In general, it is best to not have to take any medicine while pregnant. But some of us do need it even during pregnancy. For me personally, I needed the medication. I discussed it with my OB as well as a high risk OB. They both agreed that I should take the medicine during pregnancy because it would be safer for the baby if I had a decent blood pressure. If I don't have midodrine and compression then I have too much blood pooling in the lower half of my body. My doctors and I were concerned that, for me, without midodrine and compression my baby would not get adequate blood flow and oxygen. These are risks/benefits that you'll need to discuss with a personal physician who knows your fiance's health well enough to give good advice.

If your fiance can get by without the midodrine, then that would be great. But if she needs to take it a high risk OB is the one to discuss the risk/benefits with. If your fiances want to go off of midodrine, then compression garments may be a good non-medicine option.

One other thing to keep in mind is that blood volume increases by about 50% during pregnancy. This increase in blood volume may be very beneficial for your fiance, and she might not even need midodrine or compression come the second trimester when she has a lot more blood.

I wish you and your fiance the best.

Rachel

It very well could be an autonomic issue. The GI tract is controlled by the autonomic nervous system. The GI tract is supposed to work automatically, but for a lot of us it needs some help.

For a couple of years I took Amitiza, a medicine that works neurologically to make your intestines move. It was the only thing that worked for me. It is expensive, however, so if you don't have insurance that might not be an option. I don't know if a generic has been created yet or not.

I'm no longer on Amitiza. When I got pregnant 2 1/2 years ago I had to stop Amitiza cold turkey. It is a really bad medicine to take while pregnant. I was planning on doing a liquid diet during pregnancy in order to still be able to "go." While pregnant, though, I found that Miralax worked for me. I had tried it a couple of years before, but at that time I still had a large amount of fiber in my diet. Fiber makes things much worse for me, and the Miralax did nothing because of all of the fiber. Once I was no longer consuming so much fiber the Miralax began to work.

I now take Miralax daily, and it is still working as long as I don't eat too much fiber. I take a single dose, but some people with dysautonomia need 3 doses a day.

Be careful with stimulant laxatives. They are okay to use once in a while, but if you use them daily you will likely find that you need a higher and higher dose to get the same effect.

You may find it helpful to either increase or decrease the amount of fiber in your diet. Some of us do better with very little fiber, but some people do better with increasing fiber. It just takes trial and error to figure out what works for you.

I hope you can get some relief soon.

Rachel

Cerefolin NAC has helped me a lot with brain fog, forgetfulness, cognitive difficulties, word recall, etc. It is a specially forumulated vitamin that contains folate, B12, and an antioxidant. It was first prescribed for me by Dr. Grubb, and if I remember correctly he said that it was originally created for alzheimer's patients, but it works well for those of us with dysautonomia and cognitive difficulties.

Another thing that helps me with brain fog is compression and midodrine. Having adequate blood flow to my brain can make a big difference!

Rachel

Ginger,

I think rheumatologists are the ones who usually know the most about Raynaud's.

These might be helpful places to start if you want to read more information regarding Raynaud's disease:

http://www.mayoclinic.com/health/raynauds-disease/DS00433

http://www.raynauds.org/index.php

Rachel

I voted "other" for diagnosis. 16 years ago I was given the diagnosis of NCS, and then a year later POTS was added to that. However, as time goes on I fit the NCS and POTS criteria less and less. Most recently my doctors have said, "severe dysautonomia," "almost autonomic failure," and "mitochondrial disease."

Rachel

I should clarify about my vest. It doesn't have to go in the freezer/refrigerator. The ice packs come out and technically that is what you put in the refrigerator. I just find it eaasier to leave my ice packs in the vest and put the whole thing in the freezer. It saves some energy for me.

Ginger, I do have some trouble with cold temperatures. Cold doesn't cause me any pain, however. My body uses up a lot of energy to stay warm, and that makes me more tired. A few hours after being in the cold (for an extended time) I will become chilled to the bone, even though back indoors. I put use heating pads in bed when that happens.

Thankfully, I do have a lot of super warm winter gear for when I need to go out in the winter. I used to live in Alaska, so I have boots that are rated for 50 degrees below zero, a very warm coat, thick wool pants, etc. I don't think I've ever had to wear any of them in Georgia, but I did use them a few times in Kentucky in the winter.

Ginger, you said that you have pain when you get cold. Is the pain mostly in your extremities? And do your fingers turn white and/or blue? If so, you might want to look into Raynauds. There are several members here on DINET who have both dysautonomia and Raynauds. I hope you can find something that helps with the cold and pain.

Rachel

I have difficulty regulating temperature. Just last spring I had to have a heating pad on my neck and face and ice packs on my feet all at the same time. Sometimes I will get autonomic fevers (fevers that have no apparent cause other than a messed up ANS). I feel comfortable if I am in cold temperatures, but a few hours after returning to a 70 degree apartment I will pay for it with chills that won't go away for several hours.

I don't think the heat has ever given me a fever. If I am in the heat for too long my legs and feet turn bright red, blood pools rapidly, I get sick and nauseated, weak and tired, and sometimes faint. I recently fainted at 75 degrees while reclined. You know your temperature regulator is messed up when...

I do my best to keep myself in a climate controlled environment at all times. I need to stay in temperatures between 68-72 degrees. If I am in anything else for more than a few minutes then I pay for it later. If I have to go out in the heat to get to the car then I always wear a cooling vest. I bundle up in the winter to stay warm during the 15 second walk to the car.

Ocassionally I will be in temperatures of abotu 75 degrees for an hour or two (never in the sun, though). For example, I like to go to church whenever I can, but the church is usually about 75 degrees in the summer. Georgian's like it hot; I just don't understand! For times like that I always, always, always wear my cooling vest and sometimes my neck wrap too.

I have a cooling vest and a cooling neck wrap from Cool Sport. I really like them both. The vest was expensive, but it was well worth the investment. This is the 4th summer I have used it, and I haven't had to replace the ice packs yet.

About the cooling vests - You are supposed to put them only in the refrigerator so that you don't damage your skin from ice frozen bellow 32 degrees. Refrigerator temp is great if the outside temperature is 80 or less. But I have found that a cooling vest out of the fridge doesn't do anything for me once the temperature is above 80. I keep both my neck wrap and vest in the freezer when it is in the 80s and 90s.

Cool Sport also makes warming vests. I was going to order one for this coming winter, but now that we are back in Georgia I don't think I'll need it. It rarely gets cold her, which is sad for me. I miss snow and cold! I would gladly buy a warming vest so that I could go sit out in the snow again.

I hope these ramblings have helped a bit, and I hope that you can find a way to help control your body temperatures. It's hard work!

Rachel

Hi Mary,

Thanks for coming back and sharing. I hope that the physiatrist will be able to find some answers for you and start you on some better treatment. Please let us know how things go.

All the best,

Rachel

Dani,

You asked what I was talking about. Are you referring to the glasses I mentioned? They are orange and I call them my "sleep glasses." They block out blue light, and this causes your body to begin producing melatonin, the natural sleep hormone. Wearing blue light blocking glasses in the evening can help to regulate circadian rhythm. These are the ones I have: http://www.amazon.com/Uvex-S1933X-Eyewear-SCT-Orange-Anti-Fog/dp/B000USRG90/ref=sr_1_2?ie=UTF8&qid=1315018432&sr=8-2 They aren't fashionable, but they did help me to get sleepy when my sleep cycle was at its worst. I would wear the glasses for a couple of hours before I wanted to fall asleep. I still had to take a melatonin supplement, but the glasses gave the added boost of melatonin that I needed when I was at my worst.

Rachel