"Suffering the Slings and Arrows of Outrageous Fortune"

I wanted to post a bit how Em is doing since we have been making serious (and amazing) progress recently.

First, the Neurontin is helping immensely. Even on a low dose (200 mgs 3 xs a day) she is getting significant pain relief. Her pain levels have gone from a typical 8 or 9/10 to a 1 or 2/10 on the pain scale. It is pretty amazing, tbh. She waited a long time but finally has real pain relief. As a result, she is much more active than previously – she is up and around, walking more and using her wheelchair much less. She gets dressed everyday and in general is living again. That isn’t all credited to the neurontin – it is more of a thing that all of the stars aligned but the neurontin is an important ‘star’. We see the pain doc next week but we are finally getting to a really good place and it feels so good.

The other pharmaceutical players in the line up are amitriptyline, flexeril, aleve, tylenol (only occasionally as needed now), and, of course, Diamox and zyrtec/zantac. The amitriptyline has helped her sleep improve immensely, the flexeril helps with the muscle spasms, aleve is prescribed by Dr. T for inflammation and joint preservation. The zyrtec and zantac (mast cell treatment) has been pretty amazing as well.

The Diamox (which deserves to be singled out on this list) has continued to brilliantly control (eliminate) the high pressure headache, blurred vision and has even reduced some of the dizziness. It has been amazing and it has literally changed her life. (Check out the Driscoll Theory if you haven’t already. Link to Dr. Diana’s web site is on the right side of this page.)

Her foot injury is better – certainly did not get too bad with RSD like we feared. Starting the neurontin (coincidentally) when we did might have helped to nip the RSD in the bud and we are very relieved that it didn’t become a big problem. By the time we got to PT, her foot was considerably better – which happens sometimes. Chuck, our wonderful local PT, took that in stride. Basically, he asked us what we wanted to do – ‘we have some latitude here, ladies.’ So, we talked about it and decided to do some water therapy once a week for a month or so, with the goal of getting to the Y pool on a regular basis. She has had 2 sessions in the pool with Molly and has done really well. We were worried that she had deconditioned so much that water therapy would be even harder than normal – and it is challenging even in the best of circumstances. But, Em was able to all they asked of her and the second session even included turning on the jets to up the difficulty. Last year, she fell asleep before we drove out of town after each session and this week she walked (WALKED!!!) into the bookstore with me after therapy. I don’t know how many sessions we will be able to squeeze out of this injury, but I am pleased so far!

So, in pretty much every area of concern, we have seen improvement. Considering where we were this time last year or even a couple months ago, this is nothing short of amazing. I cannot tell you how thankful I am for the blessings we have. She will always have EDS and it will always be challenging but we are managing it now, with the help of the correct treatments and the assistance of some wonderful medical folks.

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Comments on: "Updates – Pain Relief, Therapy, Diamox, Etc." (4)

  1. Michelle said:

    I was wondering if Dr T knows of Dr Diana’s theory and if so what he thinks of it. Our next appt with him isn’t until Feb.

    • Unfortunately, Dr. T seems to have little appreciation for the Driscoll Theory. He refused to prescribe Diamox and flat out told me he didn’t think high pressure was the cause of my daughters headaches and other symptoms. His main concern with the Diamox was that it would result in dehydration because of the POTS. He gave me several reasons for saying no (after I asked him to share his reasons) and the concern about dehydration was the only legitimate one, in my opinion. But he wanted nothing at all to do with the theory and did not look at any of my evidence that supported my position. I do feel that he was trying to protect us and I appreciate that but we had real reasons for wanting to try the Diamox. So, ultimately we found another doctor – outside of Cin Children’s – to prescribe it. We haven’t yet told Dr. T about our success. I am not quite sure how to tell him! I do hope that he eventually comes around to accepting that this can help his patients. If you are interested in the theory for your daughter, I would advise you to try to get someone locally to listen and prescribe. Once one doc at Cin Children’s says no, you can assume they will all say no. And I have no reason to believe that Dr. T has changed his mind – I have been in contact with another mom who approached him about it and he told her the same thing he told us.

      If you have any other questions, let me know – I would be happy to share any of our experience if it can help! How is your daughter doing now?

  2. Tracy said:

    Hi, same response from Dr. T. What dosage of diamox is your daughter taking? And what dosages of zyrtec and zantac?

    • Hi Tracy,
      My daughter started with 125 mgs at night and was headache free for several months. Recently, her headache has worsened so we doubled her dose. It is better but still not perfect. We see the doctor who prescribed it this week and will see what he says. We have also started her on baking soda capsules to try make sure her CO2 levels are high enough – if they get too low, the Diamox will not work. I don’t know if her CO2 levels are off and are slowly getting better or if something else is going on.

      She is on 10 mgs of Zyrtec in the morning, and 50 mgs of Benedryl at night. 150 mgs of Zantac, morning and night. It is working quite well – she is at least able to eat now, but she still has some serious food sensitivities. I think she still needs Gastrocrom but haven’t been able to get anyone to prescribe it. We are working with an allergist, so hopefully we will eventually get to try it!

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