Selkie Posted June 22, 2015 Author Share Posted June 22, 2015 Hope the MD's get this figured out and get the exact treatments to fit the problem. Don't be shy about coming here and venting. We are all your friends from way back. Even though we can't fix it, we can listen and support you. 2 Quote Link to comment Share on other sites More sharing options...
havanaholly Posted June 22, 2015 Share Posted June 22, 2015 Hope the MD's get this figured out and get the exact treatments to fit the problem. Don't be shy about coming here and venting. We are all your friends from way back. Even though we can't fix it, we can listen and support you. Also provide prayer and lots of virtual hugs. 2 Quote Link to comment Share on other sites More sharing options...
Selkie Posted June 22, 2015 Author Share Posted June 22, 2015 Also provide prayer and lots of virtual hugs. Yup, that too!! 1 Quote Link to comment Share on other sites More sharing options...
suej Posted June 22, 2015 Share Posted June 22, 2015 Heidi, the logical part of me says to not reply because words are totally futile with your situation, and I feel helpless, but my heart can't let it go. I was diagnosed with aggressive non-Hodgkin cancer July 1, 2002. One of the side-effects to the aggressive chemotherapy was an agonizing stopped-up, tunnel feeling, ringing, hearing my own pulse as well as a throb in my ear to the beat of my pulse. When I would speak I kept having to open and shut my mouth over and over, and hold my hand against my ear applying pressure, just so I could get the words out. I kept my hand up to my ears constantly trying to lessen the agony. Even as I type this it is triggering that helplessness, and I'm tearing up and getting nauseous at the recollection. I would endure this for two weeks, then the chemo would dissipate, until the next round two weeks later. To this day, stress and severe fatigue will trigger this condition again. My experience doesn't compare one iota to yours, but just the natural comparison with what I do know breaks my heart for you. I want you to know that we validate and acknowledge with all respect what you are going through. It is okay for you to lay it all out there, yep, in black and white, hard words. I understand that doesn't help the situation, however you need to keep venting. You are strong and so highly thought of in this safe place called GL. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted June 23, 2015 Share Posted June 23, 2015 Thank you. Too late to post now. Fred goes back to work tomorrow (yay!) and I have to get back to my routine. He works 2nd shift so I bring him a late lunch every day. Spoiled brat. I will talk more. I appreciate this. Quote Link to comment Share on other sites More sharing options...
CheckMouse Posted June 23, 2015 Share Posted June 23, 2015 Hang in there, Heidi - we're all rooting for you. 1 Quote Link to comment Share on other sites More sharing options...
havanaholly Posted June 23, 2015 Share Posted June 23, 2015 Adjusting to living with a chronic condition involves a lot of angry feelings and grief, and bouts of fear as well. When I get those I remind myself it still beats the alternative... 2 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted June 25, 2015 Share Posted June 25, 2015 My brain betrays me. I cant trust it. I cant make it behave. It does as it pleases. I have to take a horrid pill to combat overly producing csf fluid and I had to change all my food. Now I am finding I have heat intolerance. Gonna make for a fun summer. 1 Quote Link to comment Share on other sites More sharing options...
chapchap73 Posted June 26, 2015 Share Posted June 26, 2015 Heidi, I have heat intolerance as well from my MS. They sell a specific kind of towel for exercise that you wet and then "snap" It looks kind of like a scam, but they do work. Portable misting fans are great as well if you have to be out. Over the years I have adjusted to doing all of my activities in the early morning or evening so as to avoid the dreaded 11-3 peak heat times. I have also seen cooing clothing, vests and the like, for sale in some of the MS publications I get. Flexible ice packs wrapped around the back of the neck are very good too. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted June 27, 2015 Share Posted June 27, 2015 Sarah, yes. A friend of mine with MS showed me a website with all the different things. I was thinking of starting off with the neck one to see how that works. I also wear hats when I am out for long periods. Quote Link to comment Share on other sites More sharing options...
chapchap73 Posted June 27, 2015 Share Posted June 27, 2015 The neck wraps are a game changer for me. Also, an ice pack over the pulse points on your wrist in combination with the neck one works wonderfully well. Before we had air conditioning, I used to sit in a bathtub full of cold water until my teeth were chattering and then sleep in front of 2 fans on high. No top sheet or anything; it's a time I don't like to relive often. With all the coping mechanisms I can usually get through most days without AC, but for sleeping it's pretty much a necessity. Talk to one of your doctors about it. I have a friend with MS who was able to get her doctor to write a prescription for her which made her insurance company pick up some of the cost of an AC unit. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted July 9, 2015 Share Posted July 9, 2015 I see my neuro on the 23rd. I will see what he says. The past few days have been brutual for me. Today is a small respite from the humidity. I am going to try to get some things done. I definitely need to get a cat scan of my temporal bone. The symptoms are not tolerable at all. I would be making pickles or jam at this time. I plan for it but i never get it done. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted July 20, 2015 Share Posted July 20, 2015 Heat intolerance is awful. It will cool off this week. I see my neurologist this Thursday to talk about the pill, Diamox, and if I should continue to take it. I am afraid he will suggest a Lumbar Puncture. Really scared of that prospect. Quote Link to comment Share on other sites More sharing options...
chapchap73 Posted July 21, 2015 Share Posted July 21, 2015 If you have to have a lumbar puncture be sure to lay flat for at least 6 hours after. No getting up at all. They are not too painful, just a little scary if you think about it too much. I have had at least 4. I would be surprised if he wanted to do one considering the problems you have with fluid leaks. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted July 22, 2015 Share Posted July 22, 2015 HOW do I lay flat when it is a hour drive home?? I have not been leaking anymore (thank goodness) so it would be a good time to do it. You shouldn't do a LP with a active leak cause it will give a false negative for high pressure. Three out of four of us are having real deal health issues. Fred with his foot and nat has early onset arthritis in her back and hyperflexiablity. She probably has a connective tissue disorder. I learned about all of this during my leak so I wasn't Googling her symptoms (spontaneous leakers are 100% connective tissue disorders. I am not SL.) . She is in PT and has a Tens unit. He has to see a neuro cause he might have nerve damage in his foot. I am really tired of the bad run of luck. It is fine if it is just me but leave my family alone. We shall see what he says tomorrow. Quote Link to comment Share on other sites More sharing options...
KathieB Posted July 22, 2015 Share Posted July 22, 2015 Lie flat on the back seat? Does the passenger seat recline? 1 Quote Link to comment Share on other sites More sharing options...
Anna Posted July 22, 2015 Share Posted July 22, 2015 When I had my lumbar punction I were not allowed to l move for a certain time (just hazy memories of this as I were wayyyy off with meningitis) the procedure in itself wasn't all that bad. But then again I was hospitilazed and kept sedated for a few days after that so really not the best kind of witness of the procedure Hugs and hope tomorrow goes well 1 Quote Link to comment Share on other sites More sharing options...
havanaholly Posted July 22, 2015 Share Posted July 22, 2015 I would think that after a lumbar puncture they would keep the patient overnight for observation; I can't imagine how anyone can be expected to lie flat unless they're sent home in an ambulance! 1 Quote Link to comment Share on other sites More sharing options...
chapchap73 Posted July 22, 2015 Share Posted July 22, 2015 When I had mine I was allowed to stay in the hospital laying flat for some time. I cannot imagine anyone with your history being told to go home right after. If they say you have to, refuse the test. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted July 22, 2015 Share Posted July 22, 2015 It would not be a picnic to have a low pressure headache on the highway. I will make sure to say I aint doing outpatient. If I could do it locally here and results sent, that would be better. 1 Quote Link to comment Share on other sites More sharing options...
heidiiiii Posted August 3, 2015 Share Posted August 3, 2015 I feel about the same but I am adapting to it. The neuro has scheduled for me to have a spinal tap Sept 4. I am not happy about that but Fred and friends are shaming me to do it. I see my ear dr in a couple weeks and I know I will be having a catscan to see when I should have surgery to repair some more skull. My hope is he says it can wait till next year but I will go by his recommendations. I am not thrilled with my faulty brain but it is the only one I have so I have to be nice to her. 1 Quote Link to comment Share on other sites More sharing options...
Selkie Posted August 3, 2015 Author Share Posted August 3, 2015 Good that you're team is on top of it all. Sad that you have to go through all this. Fingers crossed they'll find a good report when you have your tests and the weather will cooperate with you so you feel a bit more perky. Hugs 1 Quote Link to comment Share on other sites More sharing options...
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