potsgirl

I've had something similar happen...it does feel kind of like someone is 'writing' on my scalp. It comes and goes and doesn't last for very long. Unfortunately, I am on some meds that could produce that feeling, so I'm guessing that mine is from one or a combo of my medications. Sometimes I also can touch the back of my head and feel pain where I touch, which my neuro thinks is rather odd. Perhaps it's my neuro that's rather odd!

Hello Everyone,

Just a quick note to let you know that my boyfriend, David, who had surgery 6 weeks ago for an aggressive prostate cancer, has had his latest PSA blood test come back close to zero. He is officially cancer-free! Many thanks to all of you who gave your support and prayers. I don't know what I'd do without the Forum and all of you.

Cheers,

Jana

Erika,

I was also a single parent, but by the time I was diagnosed with POTS/OI my son was out of the house and in college. It was tough enough just trying to work full-time, commute 45 minutes each day and work my hours so I could pick him up from football or other sports on time, which didn't always happen. Of course, this was 8 years ago before cell phones were everywhere. I understand being completely overwhelmed...I feel that way just having to try to visit family or having them here! I can't make dinners, take people places, I have to nap in the afternoon and go to bed by 6 - well before everyone else does, and it puts eating dinner out pretty much out of the picture. I can't imagine how rough it is that you are dealing with this illness, being a single parent, AND taking care of two children. My congratulations to you for doing the job you're doing! This means you must be a very strong woman, indeed. I respect you tremendously.

As others have said, take one day at a time, and don't be afraid to ask for help. Even the strongest people need help sometime. There is no shame in this...Again, kudos to you for getting along this far, and know you'll figure out a way to make it one way or another - whatever's best for you!

Big hug and positive energy your way,

Jana

Hi Tilly,

Yes, I notice my pulse beating in several areas of my body, especially when lying down. I'm not so sure this is a POTS thing, because I've been able to do this for years. I do have a rather thin frame, however, so perhaps that has something to do with it. In my opinion, (not being a medical person!) I don't think it's probably too much cause for concern.

Just a reminder to make sure you drink a TON of water when you're going so much...Obviously, dehydration would make you feel much worse.

Have you been diagnosed with anything specific in the dysautonomia family? Tilt table testing or any other of those fun tests? Just curious....

I've actually had to resort to Darvocet sometimes when I'm in a migraine cycle. One Darvocet and one Aleve, and then lying down in a dark, cool room for a couple of hours usually helps me. Hope yours pass soon!

Exactly!

Hi Janey,

I take 2 Senna laxatives, one every morning and one every night. It's been the only thing that's helped with my chronic constipation. I can't take any of the harsh ones, like Correctol, but I've been using Senna for the last 3 years. I'm sorry you had such a bad experience with it!

Take care,

Jana

I exercise regularly and have been doing so for years, but I've never had a problem with getting really hungry after I've worked out. I'm no doctor, but it seems that blood sugar could be an issue...Are you eating before you go work out? Some carbs and protein? Also, Gatorade or Nuun or something to replace your electrolytes may help.

That is a great idea! Thanks for suggesting it...

Isn't that cool? My hairstylist would do the same, but I haven't asked her to do it yet....My dentist, on the other hand, is great about working with me.

Yes, I also get these. I think they're the worst when my BP is low. Sometimes I'll get really severe headaches that will wake me up in the morning. Then, I get really dizzy and shaky. I have to have someone help me down the stairs or I'd probably fall right on my rear.

For those of us not having breast augmentation, but other less invasive procedures, I thought I'd post on what happened to me when I tried Botox shots for some lines around my mouth. One of the injections hit a small blood vessel and I had a huge bruise on that portion of my lip/upper mouth for a good week. Interesting, huh? Not sure I'll do it again, but I might try a filler. Anyone else had shots done?

Cheers,

Jana

I'm going to pretty much echo Eric here. I can't take .1 mg of Florinef right off the bat, but have to start with 1/4 or 1/2 and try to stay with it for a week or more to see if any side effects will subside. I don't think you want to change too fast, you need to give the drug a chance to work. So if you get nasty side effects the first or third day, try to stick it out a little longer to see if they start going away. If the side effects are seriously nasty, call your doctor. If you just can't seem to tolerate the dose, cut back on your dosage like Eric said.

Most of us are really drug sensitive, so it wouldn't hurt to start at .025 for a few days and then go up to .05. Slowly work your way to .1 mg.

Good luck, and hope the Florinef makes you feel better! Are you on Midodrine, too?

Cheers,

Jana

Jenny,

Another suggestion would be to see a specialist in dysautonomia. Many of us have done this, to get more accurate and detailed information about exactly what's going on with our bodies, and the best ways to treat the particular symptoms we have. Have you seen a specialist in this area yet? I don't know what part of the country you're in, but there's a listing of great doctors also on this site. I ended up at the Mayo Clinic in Rochester, MN, when the doctors in Tucson weren't sure what to do with me. I have both heart problems and POTS/OI (my BP can get very low - I eat a lot of salt, drink a lot of water, and NUUN - similar to Gatorade without the sugar and carbs). I mentioned CFS because sometimes the doctors will tweak your meds to help with this...Are you taking any meds for your symptoms now?

Cheers,

Jana

Hi~

And welcome to the Forum. It's good to have you. I usually refuse to even have an EKG done because they can only tell you something if you're having a problem right that instant, and that's usually not the case. Do they do an echocardiogram on you to see how your heart pumps and what your ejection fraction is? Has the cardio or neuro done a tilt table test yet? You need a tilt table test to determine if you have POTS/OI. That's an important test to take. Has anyone mentioned chronic fatigue syndrome (CFS) to you? Sometimes dysautonomia and CFS go hand in hand.

The home page on this site has a lot of info about the different types of of dysautonomia, and someone recently posted this site as a good one to read up on it. It's worth your time to read, I think.

www.supportdysautonomia.org/pots.html

If you haven't already, read up on this site and the one listed above, and see if they answer any questions. We all do a lot of reading and research here, as well as help each other out with what we've learned along the way. Welcome!

Jana

I think we stayed at the Residence Inn, but I have brain fog this morning. We had initially moved into some 'suites' that were cheaper and connected to Mayo/Gonda, but they were not very nice and we moved. The Residence Inn was also connected. Yes, it was rather expensive, but they give you discounted rates depending on how many nights you'll be staying. We decided to spend a little more on the hotel and be comfortable, and less on eating out. I think it was around $140 a night with free parking. We had a very comfortable room with a closed-off bedroom, so I could nap and go to bed early while David watched tv or read. Hope this helps, and good luck at Mayo!

Jana

Sam,

I had the same thing happen to me when I was about 10. The dentist insisted there was no way I could feel pain, and continued to pull out my tooth. I refused to ever go back to him!

I am going through a down period where I really know I shouldn't be driving, so I'm having to cancel a lot of appointments that I need to go to. I'm getting so frustrated because these are dental and doctor appointments I really need to go to, and when I make the appointments I'm always hopeful and think I can make it, but then the day before or the day of I simply can't get out of the house. I know it must be annoying for me to call and reschedule all the time - I've now rescheduled a hair appointment 6 times, a dental one 4, gastro 5 - but I don't know what else to do.

We live in an area of Tucson where cab service doesn't come, and my partner works and can't take me during the week. He's a teacher, so I try to take care of most of my appointments when he's off on break, but not everything fits tidily into those time periods. I'm just very depressed because I value what independence I do have, and it seems to keep shrinking.

Thanks for letting me vent!

Cheers,

Jana

Another great article! Thank you so much for posting this. I will take it in to my dentist when I have my work done next month. It explains why I have frequent cavities and why novacaine doesn't have much effect on me.

Cheers,

Jana

Actually, it's my boyfriend that tends to bring the health subject up more. Every day he wants to know how I'm doing, and about my symptoms, and here I am working hard to forget about feeling bad so I'm not thinking about it too much. I already feel like I talk way too much about it, and try to keep my mind off of it most of the time. I'm trying to work with him so he doesn't focus so much on my illness. I think we need to get out more - if only I could!

I am terrified of the dentist. Since I was young, I've had myriad dental work done, including a lot of fillings, impacted wisdom teeth (I actually had an extra pair up high, so I had 8 instead of 6 - still waiting for the extra wisdom...sigh), 8 teeth pulled for braces, root canals, crowns, and 3 implants. I have 8 of my 22 teeth that are still all mine. One of these teeth needs to be crowned next month. I have to have gas before they can get near me with the shots, and I usually end up with 4-5 shots of novacaine instead of the 2-3 that most people would take. I am so sensitive to my other meds, but for some reason, novacaine doesn't work well for me. I have to get up very slowly from the dental chair, and have someone drive me home. It's like I'm drunk....Grrr.

Julie,

You're right, this was an excellent article. I'm going to share this with my boyfriend. We've been pulling through my illness and then his prostate cancer surgery/recovery the last 2 years. What keeps us together is our deep friendship. He's still my best friend!

I think it helps with the nausea and lessens my constipation and IBS (I have the opposite problem you have), and it also helps with my anxiety. I just feel a little better when I'm taking it than when I'm not.