Day 23

*first….I’m having trouble with my blog, I’ve written WordPress but don’t know what’s going on yet.  I cannot post any images or tags.  Sorry*

Last night I started on Diamox, per doctor Gray’s instructions.  Still talking a little Topamax, I have to wean off of it.

I admit I still wasn’t feeling great in the evening, well I haven’t felt “great” for a long time, but I wasn’t feeling good.  We decided to watch some things on Netflix because I was afraid to go to sleep.  First we watched Donkey X, a silly animated movie about Don Quiote and Sancho as told by Sancho’s Donkey….OK…that’s the very short synopsis, but really that’s not why you are reading this post is it?  Then we watched a number of old Dr. Who’s – the old one’s with Baker…if you are a geek/nerd type then you know Baker is the Doctor who had the very long scarf and the curly hair.  (perhaps the most famous Doctor of all – unless you are under 20, then it would be David Tennet) – again, not why you are reading this post huh?

Finally, I decided to try to sleep.  I have found I feel a bit better if I’m not lying flat.  So I propped myself up a bit and I do believe I was asleep before my eyes were shut!  I woke up about 4 1/2 hours later with a headache in about the 4 range.  A 4!  OK, for those of you who don’t realize what I’ve been going through (here is where I really wish I could post photos), I have been in the 7-9 range for days.  Occasionally hitting a 6, and if I hit a 5 I was pretty doped up!   I was so happy.  I thought, “Yes, this is going to work!”  Then I thought, “Well, this means I definitely have high pressure.”  You see, if I didn’t have high CSF (cerebrospinal fluid pressure) this drug would have made me feel much worse, so I took a great risk taking it, but I was willing to try ANYTHING!

I decided, to try a little experiment and lower my head a bit, I woke up at about 9:30am, and my headache had climbed to about a 6, I should have taken a pain pill, but didn’t want to do that on an empty stomach.  Unfortunately, I didn’t trust myself to go downstairs to get anything, and Stuart was too exhausted to get up yet.  So I went back to sleep.  When we woke again, my head was back to an 8.  Stuart made me some breakfast.  I ate, took my morning medications.  Including the Diamox and the little bit of Topamax.  Shortly afterward the world started to spin.  Luckily, if I stayed very still on my right side it was almost still.  So I dozed.  But if I tried to move it went crazy again!  (and oh how I had to go to the bathroom! Isn’t that always the way?)  This last over 2 hours.

My headache has been around 7 -8 most of the day unless I took a Maxalt or Hydrocodone, then it would ease to a 4 or 5.  But I feel much more dopey when I take those than I used to.  I wonder if they Diamox makes them more potent, or if it’s just because I’m sleep deprived.  Unfortunately, often when I try to sleep I start to spin.  That just happened a little while ago.  I gave up and decided to update all of you.

All and all, I take last night as a good sign.  Perhaps we can get this medication worked out and I can at least get things under control enough so I can get out of bed!  It’s horrible.  I have 2 people living in my house and I haven’t seen them in days.  I’m still lonely.  It’s sad really.  But it’s hard.  People don’t want to intrude when I’m like this.  I admit I don’t like for people to see me when I’m having a vertigo attack, or in horrible pain…but I am lonely.  Thankfully, I do have Stuart, and he tries so hard to keep me entertained.  : )

I’m not crazy about being on Diamox.  The side effects aren’t fun.  Well, two in particular.  One is this tingling sensation.  Kind of like when your hand or foot starts to go to sleep, but not quite..and it’s just an icky feeling.  The other is brain fog.  Often very intense brain fog.  So we’ll have to see if I can deal with that.

I will say, either the Topamax or the Diamox  (these two drugs are in the same class) is already reducing my appetite.  Thank goodness, I needed that!  I weighed in at the doctor’s on Wednesday at 200.9 lbs.  I NEVER thought I’d ever see 200lbs.  I’m only 5′ 4 1/2″.  I do realize it was the day before I started my period, and I was fully clothed in jeans and tennis shoes, but that should only take away about 5lbs.  I was happy today to feel like my appetite was much more back to normal.  Ever since I started having trouble with this fructose intolerance I’ve been so hungry.  Having cravings I just couldn’t satisfy.  Top that off with not being able to exercise.  I gained about 55 lbs.  Now it’s time to take that off!

Anyone out there want a weight loss buddy?  As soon as I can do any exercise at all I will be easing into something slowly.  Stuart surprised me, he’s looking into getting a therapeutic pool.  I don’t think we can afford it.  But it sure would be nice.  First things first, I need to get this vertigo under control first.  Can’t be getting in water when I can’t see straight.  : )

OK, as you can tell, I am sleep deprived and just rambling.

with no photos…my posts are a bit boring huh?

I leave you with this…..

Draw the Shades Today
Migraine Pain Robs One of light
New Meds Can Give Hope

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12 thoughts on “Day 23

  1. Oh, my friend! I hope the meds are figured out quickly! I know it’s so frustrating being confined to bed. And I can only imagine what a relief it must be to have your appetite back under control a bit more. I hate when I feel hungry all the time. **hugs!**

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  2. I am sitting here at my kitchen table trying to absorb all of this. But I still don’t understand why it won’t stop? I was horribly sick once for weeks and weeks and finally the doc did blood work and found out my potassium was very low. Why can’t they figure out something easy like that for you? Worrying about you.
    mo

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    • Mo and Laurie…. Something I learned a long time ago. Sometimes, Doctors just don’t know. They can do test after tests after tests….to the point that I end up hoping they find something wrong and have cried when a test has come back normal. But…the human body is very complex, and for many many things, they just don’t know.

      I think I have multiple things going on and that’s making this even more confusing.

      But at least we know now that I for sure have Idiopathic Intercranical Hypertension. (High CFS Pressure), now we just have to get the treatment under control. The meds at the right dosage…all that jazz. In the worst case scenario if the meds can’t control it, I would end up having to get a shunt so they could control the amount of CSF pressure I have all the time.

      They are learning so much from me, just think about the next person they will be able to diagnose so much faster because of what I’ve been going though! Now isn’t that worth it? Even just a little?

      They still don’t know a lot of things, but for about a year there, I presented as someone with low CSF, and come to find out I didn’t have low CSF at all. I am glad they are getting it straight now because my vision is starting to be affected. I’m having double vision in my right eye, and I keep seeing movement out of the corners of my eyes. Like someone walks by or something, but there’s no one there.

      We’re making progress, that’s all I can say. headaches are saying between a 4 and a 6 most of the time. Occasionally they hit a 7 or 8, but not for long. So far today, just a little bit of vertigo….so far. Knock on Wood.

      thank you to you both and to all of my friends!!! wendy

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  3. Same as Mo, do they need to do more tests so they can get more answers? Does the dr. say when this spinning life should end? I’m with you as your diet buddy when you are ready. I take topamax and savella for fibro, they seem to be working ok, not great but, what is ever great? I take topamax once a day, doc said I could take it twice day, 50mg each. I eat smaller portions but that happened long before topomax on my journey for healthy living and after gaining over 30 lbs. feel better hon. Laurie

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  4. Fingers crossed that the new medication will bring good results!
    I know all about the weight gain. In a very short time this summer, I gained over 25 pounds, my waist line increased 10 inches, and I had to get new clothes because none of the old ones fit. Even with diet and exercise, the stomach and the weight aren’t going down. I’m limited in the kind of exercises I can do — a therapeutic pool sounds wonderful! — except for my small step thingie and walking. Even after I stopped taking meds that can add weight, the scale moves up not down. It’s frustrating. I’d be your diet buddy, but I won’t get results — even on a no gluten, low sugar, low carb diet of around 1,000 to 1,200 a day!
    Sorry to go on so! It’s your blog and your health issues, not my space to rant about weight.
    Hope you can get some sleep and relief from those headaches (I’m back in bad headache mode this last month). It must be even tougher with company you’d like to visit with!
    Take good care, and I hope you start to feel better!

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    • Oh honey, you can always vent in my comments. heck you are venting about things I brought up! i bought something today called Digest Spectrum…it’s summposed to help you digest food better and absorb more nutrients. I’ve been talking to someone else who has fructose troubles and she’s been taking it and has lost 12 pounds in January. OK, I’ll try that! She said she hasn’t cut the calories, she was already trying to eat well, she’s also diabetic. She exercising a little I think, but not much.

      Unfortunately it will be a while before we decide on the pool. so many decisions. Especially if we decide to start spending half the year in Tucson….or move there. We came back here for our friends who have mostly abandoned us. Now it’s a lot of sad memories. But Stuart really doesn’t want to move back to the desert…and I love the desert. (but in Tucson we’d have a free house..and can take our time selling this one.) Plus if we put in the really nice theraputic pool there it will up the house value big time, it is retirement community heaven. And I think his father would help with the cost…so lot’s to think about. but it puts off our planning about it….a lot!

      I’m going to start eating better as soon as our guest are gone, as long as I can get in the kitchen. me not being able to cook, has put the weight on me big time. plus…I’m bored out my mind….I have found I’m eating more. and I grew up…awwww. you don’t feel good? here eat this. so I don’t feel good I’m constantly looking for that magic thing I can eat. Sad but true.

      We’ll talk more about it soon. baby to be born in about 2 weeks. they are inducing at 37 weeks.

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      • Digest Spectrum sounds interesting — I still wonder about fructose sometimes, though I have really cut back on sugar, but still each dried and preserved in juice fruits, but no high fructose corn syrup. Trouble is, I also am trying to avoid food additives and non-sugar sugar that isn’t a natural product like Stevia. I do get some sugar, too, from the honey I occassionally eat (and my gluten free granola is made with). Trouble is, I’m still not at the home baking (as in not using a mix) stage for muffins (which has some sugar), and scones which don’t. I hope to teach myself how to bake from gluten-free scratch. When I use the mixes, I add stuff like rice bran, fruit, seeds, to make it less “white bread” and have found an expense (but not in the freezer case) whole ancient grains bread without gluten — again some sweetner — agave syrup I think — and I don’t know the fructose level of that. Since it usually takes my system time to react, it can be quite a while before I notice a difference. Giving up gluten wasn’t the miracle plan that it is for some (less pain, weight loss, etc) At first, my acid reflux was better and I wasn’t getting the ‘hungry hollows” all the time. Now, the reflux is back (I had hoped to quit taking prescription meds for it — that aren’t working that well anymore any way which is usual for me and meds!)
        Good luck with all your decisions — those are a lot to make! I can see the benefits of Tucson (prices for pool installation would probably be less too if that’s where you put the pool — same for elsewhere, I’m sure), but if you’re not a desert dweller — my niece did her grad work in Arizonia. She liked the desert at first, but after 4 years was ready to move further north — midwest then upstate New York!
        We have decisions to make too, and I know how hard it can be. The housing market doesn’t help — though some places the markets are getting better if you were to sell your current place. And, a free place to stay is always tempting!
        Hope your friend is doing okay, and that everything goes smoothly!

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  5. As someone who has had various tests and multitudes of tubes of blood taken, I agree with what Wendy is saying about doctors not knowing everything. And the really good doctors will admit that to you. The Internist I was seeing said that to me and also said that they have to check medical books because they can’t keep everything in their head. It’s makes sense but it’s frustrating and nerve-wracking for us. As much as they are trying to figure out what is wrong with us, they are ruling other diseases out, as well.

    A therapy pool sounds like it could be of some help. Even though they’re expensive, sometimes a luxury becomes a tool to help you the same way me having a stationary bike is a tool. Is he looking at it as way for you to also do some exercises? Or would a Jacuzzi or walk-in bathtub be large enough for what you want to do?

    Have you considered a bar fridge and microwave for your bedroom? Or some kind of snack shelf or drawer? I know it’s not sexy, serene or sleep-inspired furniture, but if not going downstairs is keeping you from taking a pill, it might be a good investment.

    Questions, questions and more questions. Hope propping yourself up is helping with the pain.

    Hugs and love.

    Maureen

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    • Maureen the therapy pool would be for me to exercise in…I really can'[t see the expense, especially since we are talking about spending half the year in AZ. But it is sweet. We’ll talk more about it. Oh, so no a Jacuzzi or hot tub wouldn’t work. It’s for Physical Therapy.

      I don’t want to make our upstairs and bedroom convenient for me while I’m sick…it says I’m not getting better. and I am! At least well enough I can go downstairs more often again, and cook and stuff. I have to believe that.

      But I have thought of what you said. I just can’t do it.

      hugs w

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  6. Okay–I hope this medication will work for you. This sounded hopeful, at least.

    I desperately need to lose weight, but I can’t exercise. Even my doctor said I was between a rock and a hard place. I have plantar fasciitis and heel spurs, so I can’t stand or walk long at all. With the OA and fibro, the more I do the more I hurt. All I can do are little five minute sessions of some gentle exercise which, obviously, do nothing for weight loss. I was never thin and with all the stressful stuff that had been going on for the several years before I became housebound I was 40-50 pounds overweight before I became a total couch potato and gained 50 more!

    I was thinking of trying what my DIL has been doing the past few months–and losing weight. She’s been eating no bread, pasta, sweets…mostly just a lot of fish and veggies and fruit. I’m not sure I could give up carbs altogether and might have some rice. The sweets are my downfall. Well, comfort foods are my downfall. Pasta is one of my favs. I’m going to try this for a month or two and see how it goes and if a couch potato can lose any weight doing it. 🙂

    Sorry this is so long. 😉

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    • Rita, I too am between a rock and a hard place trying to figure out some ways to exercise. Deb, who follows this blog is an exercise instructor, and may be able to give some pointers. she has given me a few. If I could get to a pool, I’d be better. when I had PT in a pool it was much better, I got stronger, and even lost a few pounds, but when I have to depend on someone else to take me, it’s too hard. (I have a flotation weight around my waist and very light weights on my feet just to keep me up right but not touch I can do exercises with no gravity on my hips. it was great.)

      Stuarts talking about getting a therapy pool, but the cost. We’d have to have it enclosed. I guess we could start off with it in the garage, but not where I want to work out all the time. Even if it is heated.

      But because of our HOA, we’d have to make our back porch larger, enclose it, and get it all approved before hand…blah blah blah. Or if we got one of the very expensive pools Stuart wants, we’d at least need a fence…and again, winter would not be fun without it being enclosed. And we are talking about living the winter’s in Tucson…so I just don’t think it would be feasible.

      But water therapy would be good for you, if you could get to it…again….if we could get to it

      I am thinking about going on a diet something like you are talking, but I have to get rid of all the carbs in the house first…and I just ordered some GF noodles…and bread I haven’t tried before. so I’m thinking, probably after our house guests leave. then maybe Paleo…or if I’m still having so GI issues, maybe a version of the GAPS diet, but I may need some help on that one.

      will post soon…maybe today…having so much trouble with WordPress and Google Chrome….ugh, and no one will answer me!!!! at least you got help.

      I’m doing better, but not as well as I’d like. I do not like the dizzies, and I fell last night. but the headaches are better, and the vertigo is better…but neither are gone.

      hugs wendy

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  7. Hi Wendy!
    Sorry I have been AWOL! My blog has been a pain too…first I couldn’t get in, then nobody else could get in and now I can’t upload pictures! We have enough stress, we don’t need our stress relieving, venting mechanism to aggravate us too!
    When you are ready we will go through a program together, baby steps! Obviously your first step is to get your balance and migraines and pressure under control. Once that is settled down, then think abut moving forward. I know that you know that so for now, just get well! I think I pushed myself a little too hard these days and wound up in bed with vertigo. Yuck. A combination of stress, travel, more stress, school, more stress and a cold! Then when I felt better I looked for comfort food….all carbs! So it is a tough cycle to get out of. We feel terrible we eat comfort food, gain weight then feel terrible,eat comfort food….

    So, be well! Be patient. Soon you will get to exercising again! Love the pool idea!
    Hugs
    Deb

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