All Activity

This stream auto-updates     

  1. Today
  2. Hi Natasha Great to hear you are doing well on Aldosterone. I think it is criminal that florinef gets prescribed before Aldosterone, it's just that the drug companies can't patent aldosterone so they're not interested in it. I know of a pharmacy in Canada, that has it - pharmacysolutionsonline also profound-products who I think are distributors
  3. Interesting Natasha. Let us know if you find it. I couldn't use Forinef. Hiked my already too high blood pressure and I felt horrible. Not something I plan to revisit. But me having low aldosterone and renin, at the kidney level, makes me wonder if this is a compensation or if it's an issue. I never got the compounded RX. The guy I was talking to got other employment and the other pharmacist weren't as eager to figure it out. So it got put on the back burner. Does it give you edema? I already have too high sodium levels and don't need you hold onto more salt. My osmolarity levels are high and MSH is low. Signs pointing to CIRS - of which I'm officially DXD with. Treating mold and biotoxins much in the forefront. Issie
  4. I take compounded aldosterone. Initially I took Florinef which worked great for a couple of days and then brought on hypertension and foggy thinking. It was unbearable! Second I used large doses of Murray River pink flake sea salt to help my condition. It worked well but, I had to drink it a lot in water. I still use it religiously to support autonomic dysautonomia in the form of hypo-aldosteronism. Later, I found aldosterone on the internet from IAS (called Aldo-Pro). It worked great but, I needed so much of it that it was really expensive and delivery was horrendously unreliable!! Then, I contacted Dr. Stephen Wright's office at the Tahoma Clinic in Washington State to see where they get their aldosterone prescriptions filled because he is a proponent of using compounded aldosterone for hearing loss and Menieres. Dr. Wright's office referred me to Key Compounding Pharmacy in Federal Way, Washington. Until today, I have been using compounded aldosterone from Key Compounding Pharmacy, which has been over a year. During this time, I have slowly increased and adjusted the dose along with the support of my Naturopath, Dr. Maura Scanlan in Issaquah, WA. I experience tremors in my sleep if I don't take this compounded medication. This is the only medication that has helped me to sleep and taken away my windedness; a kind of limp, exhausted fatigue, without the HORRIFYING side effects of synthetic aldosterone that I experienced with Fludrocortisone and Florinef. Compounded aldosterone has been a profound LIFE SAVER for me!! It's shorter half-life as compared to FLorinef and Fludrocortisone makes it much easier on the system. It's gentle and effective and has brought back a great deal of quality of life for me! I recommend it with all heart! I slowly introduced it until subtle hypertension hit and then backed off the dose to just before the hypertension onset. My dose is 700-800mcg/day. I take 600-700 of those mcg in regular capsule dosing and 100mcg in time release dosing. It costs about $500/mo for these prescriptions. Since my dysautonomia symptoms are primarily in the very early morning hours when aldosterone should be at it's peak, I wake at 3 am and take my first dose of 300mcg regular aldosterone and 100mcg of time release aldosterone, and I wake again at 6 am and take my second dose of 300mcg of regular aldosterone. Then I only take an additional 100mcg around 9am a few days of the month during the luteal phase of my cycle as I notice when my progesterone levels are higher, I need more aldosterone support. I am VERY sensitive to too much potassium and can have increase symptoms of dysautonomia if the potassium is not consumed along with sodium. I have also found amazing support in maintaining electrolyte balance by using electrolyte pills made for athletes. I use "Rapid Rehydr8" capsules and take one every morning. Currently, Key Compounding Pharmacy has announced that their sources for aldosterone has dried up. I am working with Pharmaceutical Compounding Inc. in Woodinville, WA to see if they can help secure another source. I have heard that aldosterone is more easily obtained from Canadian pharmacies. Does anyone have a pharmacy recommendation in Canada? It may have to become my new source. Thanks and Good Health to you all!
  5. I have done this with other medications accidentally, I have actually called poison control and explained. They have great information on what is too much and might be harmful, what will probably be fine, half life of drugs , what to watch for etc... It put my mine at ease.
  6. Drop Attacks.

    I have never heard of that but some is familiar. I am seeing the electrophysiologist tomorrow morning, my physical therapist in the afternoon and the balance test is on Saturday. Hopefully, I can soon stop wearing my monitor, i"m starting to look like an octopus hugged me from all the rings on my chest where I pulled off the pads to change them. I'm not allergic but that glue works really, really well. I know I've got some wacky numbers on the monitor, I want to see what he says.
  7. Yesterday
  8. Does Your Body Vibrate When Laying Down?

    I call it an internal tremor and it became really unbearable, like my body was buzzing and vibrating and I was having a seizure on the inside. I spoke to my doc and asked to trial clonazepam 0.5 x2 and it's been a week...... no tremor.... I pray to god it lasts
  9. Drop Attacks.

    Have you looked into myoclonic astatic seizures. my son had this epileptic syndrome where he would jerk as though punched in the stomach and then drop. This increased rapidly week to week till he was medicated . Not sure if it's relevant to you but the " drop" bit just brought back memories
  10. Scared to go out or do anything!

    Thank you so much for your replies everyone!! It has made me feel a little more normal and not like a crazy person that needs to be on meds for that too! I try not to be still for too long I manage to get to work most days but we have a nurse on staff so I know I am safe and they know about my condition. When I'm home I force myself to clean the house from top to bottom which can take up to 4 hours on and off resting here and there. But I feel that the outside world is so scary at the moment I might try and go for a little walk. My confidence in my body is at an all time low before I got sick I was walking 8 kms a night and loving life always out with my son, going for dinners, working back just to help out now I feel it has all been ripped away from me. I struggle to get up and make a school lunch. I think it's a big worry of mine that I don't want to scare or embarrass my son if something happens while we are out and I have to leave or have to call an ambulance. I really just want to go back!! But I guess everyone would if they had the chance.. I can't be thankful enough though for the support from everyone here. Having others to talk and listen too who understand makes you feel human again.
  11. Welcome new members 9/12- today!

    Welcome to the group, nice folks here!
  12. Do you happen to have Dr. Thompson's number? The one I found online has been disconnected. I was a patient of Dr. Cecil Coghlan's and I went symptom free for yrs until a few months ago. My POTS is back with a vengeance and P'cola is only an hour away. It will be Dec before I can get into University of AL @B'ham again. Thank you

  13. Scared to go out or do anything!

    I've had severe pots for about 4 years now, and have been housebound this whole time. Dizziness is my worst symptom, I don't have much upright time before it starts and I have to lay back down. It interrupts everything and I'm unable to drive because of it too. If I do leave the house I try to plan as much as possible. I'm the opposite of a lot of people in that I'm best in the mornings but fade and get worse as the day goes on. So I plan activities or doc appointments in the mornings. I have enough time in between to lay down and rest, conserve energy and not feel dizzy if I have to do something else after. If I'm going to a new place, like a doc's office, I call ahead and see how far is the walk from the lot to the office, where are the bathrooms and what is the seating like. I can't sit upright in a chair for very long because of the dizziness so knowing what type of seating they have is important. I've also found trying to find a new way of doing old things has been helpful. I have a young child and like you said, I can't go anywhere or be very active with her. Instead I focus on the things I can do, which are passive things while laying on the couch such as reading, coloring, puzzles etc. Driving has been a huge challenge so I hired a caregiver who drives me to appointments, helps with errands etc. If she's not available I've even taken uber when in a bind. as far as pushing through symptoms, for me it's a fine line between doing enough so you're not worse but not too much so that you're in bed the next day or two recuperating. Exercising on a recumbent bike helps me a lot, if I don't do it then I'm dizzy immediately when upright. I started doing some treadmill work. It's very slow, but I'm now up to 30 minutes one day a week. If I do it more, I end up in bed for the next day. But, the fact I'm able to do it at all is something I never thought would be possible so I'll take it. Hopefully you can find something to help manage your symptoms a little better.
  14. I understand that, and I'm not asking for medication advice. Sorry if it came across that way. I want to know if others have done this and, if so, what they experienced. I'm not looking for a lawsuit. I'm just scared and wanting to talk to others who may have been in this situation.
  15. Scared to go out or do anything!

    I can relate to this, too. It still comes and goes for me. I certainly push myself and have done so in the past. This helps immensely, because in the future you can look back and think, "Well, if I did ___, I can do this." I also wear a medical alert bracelet with my DX, med, and ICE information. I don't know how much it would help if something actually happened, but I feel much more confident when I'm wearing it.
  16. Your doctor or pharmacist would provide advice on dosage.
  17. Scared to go out or do anything!

    I can relate to feeling this way. When I had severe symptoms I was mainly homebound -- only leaving for dr appointments. It is scary when you feel quite poorly and you could have disabling, severe symptoms at any time. I agree w yogini about pushing yourself a little. Unless driving or other activity would be unsafe of course. I found I felt best in the evening and worst in the AM. So if I was going to try to do anything I would try to plan for later in the day. Also, it was helpful to keep hydrated and bring fluids with me. I tried starting small, with just a short walk in my neighborhood each day. For many of us, too much sitting or lying down doesn't help with recovery. In retrospect for me too, I wish someone had encouraged me to push through symptoms a little more than I did. These days when I am more symptomatic I do try to push through more than I used to when I was first diagnosed. It's good to talk to your doctor too about your specific situation and what activities are safe or advised (eg if you are fainting, you want to protect yourself from injury).
  18. Scared to go out or do anything!

    I am better now. Looking back I was more scared than I needed to be. It is important to be cautious but also important to push yourself a little, Yes activities triggered my symptoms, sometimes a lot. I didn't wind up in the hospital. Sometimes I had to sleep or rest for a few days. No activity made me permanently worse. And It was always worth it. Also practice helps. Go to a neighbors house for 10 minutes or run quick errands to build your confidence.
  19. Hi everyone, The brain fog has been bad lately for me and I think I may have accidentally taken two of my mestinon pills this morning instead of one. Although then I'm second-guessing myself and wondering if I took any at all! It happened when I was filling my pill case.. I've got to remember to put all the pills in and THEN take them, not try and take them as I'm filling it Gahh... Has anyone accidentally doubled up on mestinon? My pills are 60 mg and I usually take one in the morning and one in afternoon/evening. This would have put me at 120 mg at one time. Has anyone been told this is dangerous?
  20. Scared to go out or do anything!

    I'm scared to go out too. In case I overheat or faint or in case something happens which I'm not aware of. All I can do is try to accept what's happening to me.
  21. Hi all, I have been diagnosed for nearly a year and I haven't been anywhere except for doctors, specialists or hospitals. I'm really scared to go out and have to leave or have a moment and feel really bad. I feel like I'm not living, I can't take my son anywhere or do anything with him. I'm scared all the time. I've had bad thumping in my chest last night and today it stops me in my tracks and feels like my heart is going to burst and it scares me to the point where I don't want to do anything. I don't want to go to hospital they won't do anything for me there anyway. I just hate being scared all the time to live. any others stories much appreciated xx
  22. Last week
  23. Can you tell me where you got the vest? Have you considered air conditioning? I'm in UK too
  24. I've not been anywhere the last few months. Summer is over but it's still not cool enough to go out if the sun is out. A few days ago, I left home to get groceries. Bad mistake. The sun came out and I quickly began to feel too warm. Physical exertion + direct sunlight can easily overheat you if you can't sweat. Was your loss of sweating allover? What made it come back? I've read steroid therapy is the only treatment and results are varied
  25. Hi Jim67, welcome to DINET! I'm sorry you are experiencing this. Have you been able to see an autonomic specialist? I've been having periods of not sweating in the past (I think up to several years) but things came back to normal. Not sure why but it sure makes my life easier. Not being able to sweat can be quite dangerous I've been told. Hope you will find some answers.
  26. Hi. I am sorry to hear that you are having such problems. I have similar issues. I have autonomic dysfunction and peripheral neuropathy. I also have sweating issues. I overheat easily and also my limbs freeze in cold weather. The worst of my symptoms came on 10 years ago and for the nerve pain, I take Gabapentin (Neurontin) and Nortriptyline. I also have a fast heart rate. In the summer, I use a tower fan, drink lots of iced water and the best thing ever is my cooling vest which is a vest with ice packs inside it. I love my vest and bought it online and it is used all summer to stop me overheating. In the winter my torso is a fiery furnace and my arms and legs have to have layers of clothes to keep warm. If you need any help or advice or even a chat message me on here. I wish you well as I know all this can be scary at times. (PS I also have EDS, POTS and MCAS)
  27. Welcome to the forum! We hope this is a helpful resource for you. Please feel free to post an introduction or on a topic you're interested in. MelissaMK papillon alkria Megans dad DanibeeMarie nomdeguerre Donna B
  1. Load more activity