Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
Just for the curious:
I stopped my 2500 mgs. of Diamox and 20 mg. of Lasix that I was taking daily, cold turkey, on Friday afternoon. What has happened since???....
On Saturday, I felt increased pressure in my head and I looked a slightly swollen. However, this could possibly be due to the sudden change we had in weather bringing a record high of 87 degrees to Rochester, NY. I have historically had this kind of reaction to heat and sudden weather change. I didn't, however, have a headache. Again, I believe the HA's I was having recently was due to the excessive 2500 mg. dose of Diamox. I believe that some Diamox must still be in my system because I was experiencing the occasional pins and needles sensation. I know they say Diamox only stays in the system for 6 hours, but, I would argue that point. As I was on such a high dose, it wouldn't surprise me if it is going to take several days to empty out of my system. I am drinking lots of water to try and speed up that process. I was unusually tired though, and in turn, slept almost the entire day. Surprisingly, I also went to bed at 11 p.m. and slept all night until 10 a.m. today.
On Sunday, the weather was much cooler with a high of only 55 degrees. We are supposed to get T-storms tonight with a high tomorrow of 86 so it will be interesting to see how this effects my head. Again, I slept all day today. I am very weak, and still having some pins and needles, parasthesias in my hands, feet and legs. As such, I still feel that there is some Diamox in my system. No HA yet.
Of course, it has only been 2 days, but, I thought you might be curious. We'll see how the rest of the week goes. Updates to follow....
I stopped my 2500 mgs. of Diamox and 20 mg. of Lasix that I was taking daily, cold turkey, on Friday afternoon. What has happened since???....
On Saturday, I felt increased pressure in my head and I looked a slightly swollen. However, this could possibly be due to the sudden change we had in weather bringing a record high of 87 degrees to Rochester, NY. I have historically had this kind of reaction to heat and sudden weather change. I didn't, however, have a headache. Again, I believe the HA's I was having recently was due to the excessive 2500 mg. dose of Diamox. I believe that some Diamox must still be in my system because I was experiencing the occasional pins and needles sensation. I know they say Diamox only stays in the system for 6 hours, but, I would argue that point. As I was on such a high dose, it wouldn't surprise me if it is going to take several days to empty out of my system. I am drinking lots of water to try and speed up that process. I was unusually tired though, and in turn, slept almost the entire day. Surprisingly, I also went to bed at 11 p.m. and slept all night until 10 a.m. today.
On Sunday, the weather was much cooler with a high of only 55 degrees. We are supposed to get T-storms tonight with a high tomorrow of 86 so it will be interesting to see how this effects my head. Again, I slept all day today. I am very weak, and still having some pins and needles, parasthesias in my hands, feet and legs. As such, I still feel that there is some Diamox in my system. No HA yet.
Of course, it has only been 2 days, but, I thought you might be curious. We'll see how the rest of the week goes. Updates to follow....
It took a couple of days for me, to feel like the diamox left my system..I don't know what the half life is of diamox but since you were on such a high dose it doesn't suprise me.
talitha had a great suggestion of writing down your symptoms to show the Dr's. i wonder why you are so tired, do you think it is just the stress your body has been under from all the a pain and is trying to heal itself?
I'm sorry your neuro Dr. just kept upping your meds..I took a biotech class last year and one thing I remember thinking is that we are all just guinea pigs for all these meds that are given us....know wonder i crave lettuce and want to pee on shredded paper, lol.
Keep us updated and I pray that you con't to get better and better! Blessings, Jazzy
Jazzy - Very good questions. I don't know if the pressure is being placed on a facial nerve, but I suppose that would be a good question for the experts. I can tell you that historically on days when I had high pressure and a HA coming on, without knowing what I was going through, family and friends would comment that my face looked swollen. Has anyone else here had that symptom or have any input on this? IDK
The excessive sleep could just be that my body is going through such extreme changes and needs the rest. Although, I can tell you that the two years that I've had symptoms I suffered from chronic fatigue. I didn't sleep like this but felt like I could barely move. Most days I would go to work and come home and crash on the couch then go to bed...anything more was almost too much. That is when the weight started coming on. This evening I feel a little better...so maybe it just takes time. Again, IDK...but, its worth asking about.
I never lost any weight on Diamox. In fact, since my diagnosis I gained due to the 2 rounds of steroids. Part of that was due to the havoc these meds placed on my stomach. So, I'm hoping I feel better soon so I can try to get moving again. And again...IDK.
I really don't know what I'm doing and I don't know what the answers are...I just know what I've been doing wasn't working either. I'm searching for answers.
Now, where's my lettuce and shredded paper???
Definitely write all of this down, and how it made you feel. You could even look back at your old posts to get a gauge of how you were doing on different mixes of meds. Something has got to work.
We'll be watching and wishing the best for you!
Bax
I didn't realize that Diamox was only supposed to stay in your system for six hours but I know it's longer than that. When I was in the hospital last weekend, I woke up at 4 AM with such extreme tingling that I felt certain they had found some Diamox to give me. But the nurse said no - it was still from the dose I had taken at noon the day before (and I wasn't taking anywhere near as much as you!).
I'll be thinking of you this week MM3 - I pulled myself off of Diamox on Saturday after another horrible day of breathing trouble. Since I doubled my Topamax Friday (per doctor's orders) and that didn't bother me, I decided to see if it was in fact the Diamox. I noticed a big improvement in my breathing yesterday - 24 hours after being off of it - and today is better still, so that tells me what I needed to know. So far, so good. Increased pressure, yes - but I'm SO happy to breathe normally again it's almost worth it (so far anyway)!
You know most of my story but the biggest surprise for me when I stopped Diamox cold turkey was I thought my pressure would skyrocket to the moon and nothing changed at all WRT pressure. I was long past feeling pins and needles. And my headache got much better.
I once asked my neuro if ones body could get use to Diamox while at the same time I showed him my "yellow highlighted" medication paperwork from the pharmacist that stated "when used for an extended period, this medication may not work as well and may require different dosing" and "Acetazolamide can work less well over time, so it is usually only used for a short period". He of course said this is not true. However I asked the same question to my NS who said yes that can happen.
My NS hates diamox! He calls it poison. He told me it does not stay long in your system very long as shown by its relatively short half life of 3 9 hours. I did a little research and interestingly, no matter what the half-life of a medication is, it takes about 4 half-life units for the concentration of a medication in the system to reach a steady state. Thus if you begin taking a medication with a half-life of 6 hours, on the second day (after 24 hours) the rate of intake of the drug will approximately equal the rate of elimination. So based on a 3 9 hour half life, that means 12 to 36 hours after you stop taking Diamox, it will be completely out of your system. And remember if it has been in your system for a long time it may not have been doing much anyway.
Did I just confuse everyone?
TJ
Psuedo Pharmacist
glad to hear things are going well with the cold turkey dropping of the meds. sounds like everyone is dropping the diamox. I cant remember if we tried that one or not. I know I had one that I was allergic to and I cant remember it either but it helped the headaches. dr chewed me out cause I took them. allergy was less misery than the headache so I didnt care. love to all of you
I am so grateful to all of you for participating in this post. If nothing else, I find that sometimes these posts can get that little wheel turning in the brain and we find that a symptom we never thought about before could be part of PTC. (As with the facial swelling.)
TJ, I understood what you were saying but, I must admit that engineering mind of yours far surpasses my literary brain. Therefore, I had to read over it several times, run a few calculations and THUS the lightbulb turned on. GOT IT! Much easier, BTW to understand these things off the Diamox. Much to my family's dismay I am much sharper...the kids are getting away with far less, and my husband too! LOL! However, I think they are happy to see a glimpse of Mom back. All the kids were surrounding me on the couch this evening...including my 18 year old son! I actually began to get a little claustrophobic (sp?) after awhile...but, I was very happy to be back.
Bax, good to know I wasn't just lazy. Coming off the Diamox is almost like starting the Diamox. I recall having the same lethargic experience when I first took the medication.
KSMama, I am so glad to hear you are breathing better. I was really worried about you. I'm not at all surprised that it was the Diamox.
K, interesting that you brought up the swollen neck. I can't say that my neck swells, but as I've mentioned before I do get a "lump" high in my neck behind my chin. And, yes, my PCP sent me to the dentist at one point to make sure I didn't have an oral issue. Of course, I didn't. I have that swelling again, but still can't say what it is.????
As for today, well I went through a bit of detox. (I'll leave out the details). I do feel like the Diamox is finally leaving my system. As such, I can say that I am feeling some increased pressure behind my right eye. But, again, so far, there are no severe pains or reasons to get treatment.
I do want to ask my NS if thyroid tests were run on me at the hospital. I would think they covered everything. But, given some of the symptoms I've had over the last couple of years I'm wondering if the PTC could be secondary to hypothyroid. Hmmmm...
With all the things happening in the world I am glad this is all I have to deal with. Could be so much worse. I pray for all of as always, stay safe and well. (You can tell I've got the news on in the background...how depressing.)
- MM3
I would never encourage anybody else to follow my path in stopping Diamox. I would however encourage everyone to persistently advocate for yourselves. Each of us are entitled to support, proper care, and most of all, compassion from our medical community in regards to our condition.
I am experiencing more pressure behind the eye today and some aura with spots or "floaters". I also have a constant runny nose and oddly enough a constant funny taste in my mouth and smell. Kind of salty. Weird. I'm hoping I don't have excess fluid orally. All I need right now is a root canal. Good Lord! Anyway, as such I would guess that a PTC attack isn't too far off in the distance.
I guess I'm just being stubborn and selfish. I wanted my life back and I wanted to take a stand. May not necessarily be in my best interest, but this is the route I've chosen.
I'm doing well now and I'm hoping it will last... we'll see.
I have been feeling incredibly better since stopping the Diamox. I have been able to get back to life with my family....cleaning, organizing, running errands, etc.
That being said....I have been fighting a HA for a few days now and my pressure is back. I had a "swish-swish" in my ear today, and as I mentioned once before, my head looks like a watermelon. However, for the women here...(men close your eyes...yes that means you TJ...) I am due to start my cycle here in a couple of days so I would assume that might have a little to do with it. The real test will come once that is all finished. I'm keeping my fingers crossed.
In the meantime, I am waiting to get into see the PTC specialist (Dr. Deborah Friedman) on June 8th. I really think that the Diamox was toxic for me. Possibly because they had me on such high doses. But, I never lost weight with it and really didn't see a lot of success by way of how I felt.
Thank you for checking in.
- MM3