Rachel

Hi Kathy,

I had some rough times with my POTS when I was 15 and 16, and then my health improved significantly for a while. I was able to work at summer camps from the ages of 17-21. I could tolerate the conditions of no air conditioning and hiking through the mountains. I was also able to go to college, something I had at one time thought would be impossible. My health has gotten a lot worse since then, though.

Sorry. I know I don't have the most encouraging story. The good thing is that about 80% of teenagers do recover from POTS by the time they are in their mid-twenties. I was reading that earlier this week in an article by Dr. Grubb. You don't find too many people here on DINET who have recovered because they are out living their lives, not stuck at home looking for information and support.

You do have a good chance of recovering or at least being able to lead a fairly normal life. Keep working hard and doing what you can to treat your POTS. I hope and pray that in time you will recover.

Rachel

Prescription meds that can help are Provigil, Adderall, and Ritalin.

Over-the-counter things that might help are B12, CoQ10, or a good multi-vitamin. Caffeine is also helpful for some of us.

Rachel

Hi Kathy,

Welcome to DINET!

I was first diagnosed with POTS at the age of 15 (which was 15 years ago now!) after about a year of searching and misdiagnoses.

There are other treatments available besides midodrine that may be helpful in preventing the dizziness for you. You can read the What Helps page on DINET. There is a list of medications and another list that has non-pharmeceutical treatments.

I'm glad you found DINET. I hope that you find this to be a helpful and supportive place. We do have some other teenagers here, but they don't always post regularaly. Hopefully some of them will pop up soon.

Rachel

Hi Billiam,

It sounds very likely that you have some type of dysautonomia. It could still be POTS even though the 30bpm heart rate increase was delayed. As you said, you were having a better week, which could change the test readings. The medication could have changed your heart rate and blood pressure as well. Did the doctor know you were on Metoprolol during the tilt? You might want to ask about going off of the med and being retested to get more accurate results.

Welcome to DINET! I hope that you find this to be a helpful place.

Rachel

I am taking 30mg of amitriptyline a day for migraines. I haven't had any side effects of heart beat irregularities, low sodium levels, low blood pressure, or tachycardia. The medication has been effective at helping to keep migraines away, and it has especially helped with the symptoms of sensory overload I get along with migraines.

Everyone reacts to medications differently. Lots of side effects have to be listed as possibilities, but you may find that you don't get any of them.

There have been some discussions about amitriptyline in the past. You may find some more information by trying a search.

I hope the med works well for you if you decide to try it.

Rachel

Oh, Tearose, I am sorry that you were treated so terribly. That is just awful! You should never have been treated that way. Those doctors had no right to do that.

I'm so glad the judge ruled in your favor. Rest and take the time you need to receover from this ordeal.

Rachel

You're welcome, Sallysblooms. Glad I could help.

If any of you want an avatar but can't get it to work, feel free to let me know and I'll do what I can to fix it for you.

Rachel

I take the regular Claritin, not the Claritin D. I take the generic version (Loratadine), and it is a 24 hour tablet. I don't know what kind would be the right one for you, though. You'd have to check with your doctor.

Rachel

I know that in the past the forum settings have not allowed the uploading of pictures onto DINET (even though there is a box that says "upload a new image from you computer"). An avatar has to be linked from another site, and the link has to be a direct link (not an HTML code or forum code). The link will begin like this: http://www.

Does this help?

Rachel

I take 400mg of magnesium daily. My doctor recommended this when I was pregnant and didn't want to take a migraine medication if I could avoid it. The magnesium helps some, though I do have to take a small dose of a prescription med now in addition to the magnesium.

I have also tried MigreLief. It has magnesium, feverfew, and riboflavin. I didn't find it any more helpful than just magnesium, but I have read that it is beneficial for some who suffer from migraines.

Rachel

Chaos, I got a chuckle out of "the other m-word." I did something similar once when we were getting ready to have people over for hamburgers. I referred to ketchup as, "you know, that red stuff?" For the life of me, I could not remember the word ketchup!

Rachel

I have memory trouble, but I still usually refer to it as brain fog. It can get really bad sometimes. I once forgot who my son was. He ran into the room, and it startled me because I thought I was home alone, and I didn't know who the child was. It took a few seconds for me to remember that I had a child, and that the little boy who came into the room was mine.

It is scary when brain fog and cognitive problems get that bad. It leaves me mostly unable to communicate. My husband will ask me an easy question, and I'll just have to say, "I don't know." Because I really don't remember.

I take Cerefolin NAC, and this helps me a lot. I'm still always a little "foggy," and I still have times when it gets bad, but the Cerefolin NAC does significantly improve my memory, ability to concentrate, recall words, and carry on a conversation.

The really bad periods of cognitive difficulties I have had are believed to be caused by hypoperfusion. Hypoperfusion in the brain can really mess up one's thinking. Going to bed and raising my feet with pillows helps some. Sometimes I still have hypoperfusion even when lying down, and we just have to wait for this to go away. I have had the really bad periods of brain fog last anywhere from one day to a couple of weeks. I've talked with my doctors about the severity of my brain fog, but they haven't found anything wrong other than dysautonomia.

So, all that to say, your memory problems could very well be POTS related. This comes from the POTS Symptoms page: "Cognitive impairment (Grubb et al., 1997) (may include difficulties with concentration, brain fog, memory and/or word recall)."

Rachel

I am currently taking claritin. I don't have any side effects from it.

Rachel

Hi Jodielynn,

There are several medications and supplements that I am currently taking. I suppose it is all relative to say whether or not they are working for me. They all help a little bit, but I am by no means even close to a normal level of functioning. I have to be in bed 18 hours a day, and in my recliner for the majority of the 6 hours that I am "up." However, this is an improvement from a few months ago when I had a bad crash and was all but completely bed bound. We tweaked my meds and treatment, and I am feeling so much better than I was this past fall. I can rarely leave the apartment, even with help, but I am so glad to be able to spend some time with my family every day again.

My current treatment is:

Midodrine - to raise my blood pressure

Miralax - for chronic constipation/bowel dysmotility

Omeprazole - for reflux due to gastroparesis

Seasonale - continuous bcp to even out hormones. This helps to prevent monthly crashes.

Amitriptyline - for migraines and sensory overload

Claritin - for allergies

Melatonin - helps me sleep

Cerefolin NAC - helps with brain fog

B2 - for mitochondrial disease

CoQ10 - for mitochondrial disease

IV Saline - to raise blood volume and get sufficient fluids in (because of gastroparesis I can't drink enough fluids anymore)

I also take a multivitamin, magnesium (for migraines and muscle cramps), calcium, and use peppermint tea and/or ginger root capsules for nausea as needed. I wear compression to help prevent blood from pooling.

Rachel

Sunfish has some helpful information for adding an avatar in her topic, Helpful Hints for Forum Participation. I will copy it below. If you are still having trouble after reading her tips, let me know.

Adding an Avatar:

You may also notice that many members have a picture, or avatar. If you have a picture of your own that you would like to use, the easiest approach is to upload to a free image host online, then use that URL to link your picture in your control panel on DINET. Several free image hosting sites include:

http://www.imageshack.us/

http://www.free-webh...age-hosting.php

http://www.imagedad.com

Alternatively, if you are tech savvy and have webspace allocated to you by your internet service provider (AOL, MSN, Verizon, Comcast, etc) you can upload your images to your own personal webspace and copy the full URL of your image.

Once you have done this go to "My Controls" and along the left hand side click on the option for "Edit Avatar Settings" under the "Personal Profile" subheading. On the blank line under "Your image avatars" there is a space to "Enter a URL to an online avatar image." In that space you need to cut and paste the URL for your image at your host site. Click "Update Avatar" to save your settings and you should be all set.

If you do not have a picture of your own that you would like to use there are also some available on the site on the "Edit Avatar Settings" page under "Pre-installed avatars."

My mitochondrial disease specialist told me to take 200mg 3 times a day.

Rachel

Thanks for the update. I hope that doctors will be willing to share their research with the FDA, and I really hope that midodrine will stay on the market.

Hi Jodielynn,

I did try Epogen about 3 years ago. It wasn't beneficial for me, but I know that it has been a huge help to some others here. You could try doing a search for Epogen and Procrit (another name for the same drug). It has been discussed many times in the past, and you may find more information that way.

Persephone gave a good explanation of what Epogen does. She is correct in stating that Epogen will not cause anemia. It is used to treat anemia by helping your body to create more red blood cells. Anemia FAQ's: "Anemia develops when there are not enough healthy red blood cells in the body. This condition can be detected when there is a below-normal level of hemoglobin in the blood."

My insurance was just the opposite of yours. They covered Epogen without a problem at all, but they would not cover Octreotide for me. I hope that you can get the coverage you need to try Epogen, and I hope that it is beneficial for you.

Rachel

If the seating there in the auditorium is uncomfortable, can you bring your own seat that is easier for you (wheelchair, camping chair, or a reclining chair)? If you want to sit in the seats in the auditorium, perhaps you could bring a footstool so that you don't have as much blood pooling in your legs and feet. Getting enough rest, salt, and fluids the day before will probably be beneficial as well. If you still feel too weak and sick during the play, you can always lie down on the floor. I have laid down on the floor in more places than I can even remember anymore (Wal-Mart, my brother's wedding, church, conferences, airplanes...)

I hope that your daughters play goes well, and I hope that you will be feeling well enough to enjoy it.

Rachel

Some people are prescribed a dose of 0.2 mg daily, although not everyone can tolerate that high of a dose. Taking it just one day most likely won't cause any problems for you. Just be careful!

I have messed up with my meds before too. There was one morning that I accidentally took my night time meds (including my melatonin), and boy did that make for a rough day!

Rachel

Mine dipped pretty low one time a few years ago. My nurse was checking my orthostatic heart rate and blood pressure. When she finished, I laid down on the floor exhausted. At that point my oxygen saturation went down to 76% and stayed there for about 30 seconds, and then it came back up. Usually my saturation is 96% or above.

Rachel

It was my understanding that 0.2mg a day is the max dose for Florinef. I would be concerned about taking a total of 0.3mg a day. I would definitely want a second doctor's opinion on that one.

Rachel

Wow. I'm not sure if I should be amazed or if I should laugh! I can see how this might be helpful for some people who don't have the energy to walk very far. However, it seems to be marketed toward healthy people, so I couldn't help but think of the movie Wall-E while watching the video.

It is a really neat gadget. Gadget seems like such a small word for such an incredible piece of equipment. It's not something I would be able to use, though. I need the full support of a wheelchair seat and back. Sitting up on that thing would be exhausting for me, and it would allow more blood to pool than when I'm in my wheelchair.

Neat stuff, though!

Rachel

I have never tried the Upsher Smith midodrine. Have you started taking it yet? How is it working for you?

I found an old thread about midodrine manufacturers. Sunfish lists Upshire Smith midodrine as one she has tried, and it was effective for her. Here is the topic if you are interested in reading it: Generic Midodrine

Rachel

Hi Bev Ray,

I'm sorry you are having so many migraines each month. They certainly make life difficult. It sounds like you probably need to have your medication adjusted by your doctor. 50mg of Topamax isn't very much, especially considering the number of migraines you still get each month. It would probably be helpful to go to a neurologist to discuss your migraines and a better treatment plan.

I don't have a diagnosis of autonomic neuropathy, but I do have dysautonomia, and I have found that preventative migraine medications are helpful.

I hope you can find something that works for you.

Rachel