Hyperbaric oxygen therapy
 

I'd like to preface this with the fact that I've read all the old posts on here and everywhere else I can find, including medical journal articles. I just want to see if there are any additional comments or experiences from members of this list:

After a long journey to find a reputable clinic (that will do off label) on the advice of my Drs, I'm starting hyperbaric oxygen therapy (HBOT) this Monday. I'll do 10 treaments and then evaluate before doing 30 more. I have pretty severe swelling in my entire right leg and lower right abdomen. I'm hoping at the very least, it will help the edema. Has anyone had this treatment? If so, what kind of results did you get?

Thanks for any help.

Denise

hi Denise. i hope that your treatments will help you. i have never tried this procedure so i can't offer any advice but wanted you to know that i am hoping for the best for you and will keep you in my thoughts. take care and soft hugs.

Depending on the protocol the HBOT center is using, 10 might not be enough to really determine if they're helping. I didn't experience much change until we started diving deeper, faster. Ultimately, it cleared up an area I had spread to, but didn't change my original site--although swelling was reduced. I would encourage you to attend pt, swim in a warm pool, do yoga or tai chi, have massages, go to infrared saunas, if at all possible, during the same time period. Follow the CRPS diet. Take high doses of Vit C and if you respond well to steroids, start a course maybe after your 3rd or 4th dive. Reduce as much stress as possible and make it a period of time where you're truly focused on healing.

Hi LIT LOVE. Thanks for your reply. It was very helpful. The ten days is more so I don't have to commit to 40 sessions if I'm having some complication such as with my ears, sinuses or such. I have a lot of problems.

I'm on Dr. Wahls' Paleo diet and I've been doing a lot of meditation, and yoga as I can. I used to do yoga consistently years ago so I have a good routine. I think I'm covered with the supplements such as Vit C.

I've had Addison's for 25 plus years so I have to take replacement steroids every day. I also increase them as needed for other autoimmune and rheumatological problems. I think I'll know if I need to increase them depending on how I feel but sometimes I need cues to help me decide. It was a good suggestion to consider increasing them.

Finally, thanks for the reminder to keep this period of my life as stress-free as possible with the thought of dedicating it to healing. That's a good mindset.

How long did it take for your swelling to start going down and was it permanent?

I had spread into one of my lower legs that had been getting progressively worse for about a year, and the HBOT resolved that area.

My original site which is my dominant arm, was 7 years post RSD at the time and I only had temporary swelling relief--within days my arm was back to it's regular dysfunctional self.

Thanks for sharing is my first time hearing about it and I have a new pmp hope we can incorporate in my case.:grouphug: thanks to all ,Jesika .

The first HBOT treatment today went well. No changes yet of course. Maybe a little less dizzy and foggy headed. Now for 39 more. I'm excited!

HBOT report
 

Today is my day off. I go every day except Sunday. First six HBOT treatments report:

No reduction of swelling yet :( I knew it would take time though. I still have 34 more treatments to go. Good news is I'm having less pain, the leg doesn't feel as inflamed and best of all, I'm way less dizzy so I can drive! I've been housebound most of the time for months because of the dizziness. It’s tough to drive the two plus hours every day but I'm committed to it.

It's supposed to make you really tired and hungry as it ramps up your metabolism to help healing. So far I'm really tired and sleep a lot but not hungrier. If I'm as skinny as the skinny (un-swollen) parts of me look, I'm really skinny. It's weird to not know what your body looks like. At least the body I'm used to. Anyway, this treatment has become my full-time job. If I’m not there or driving back and forth there, or doing my allotted one errand a day that I can manage, I’m sleeping an insane amount, researching or meditating or figuring out supplements, or something related to getting the most out of this treatment and healing.

Don't worry, I won't bore you with blogging this every week. I'll reserve further posts for major changes.

Denise

Thank you for sharing, Denise! I've heard of several people who had very good results with HBOT, and several others that had at least some improvement. Please keep us informed. I definitely have an eye out for this treatment.

You're surely not boring anyone with these updates ~ all who suffer from this horrible disease (esp my daughter) are anxious to hear if these treatments help you!! Best wishes!!

Agree with bluekrikit! Update away if you feel drawn to. Would love to hear about it and I'm sure many in the community here would be highly curious about your experience with HBOT.

Update
 

Well, ok :) I suppose I should write the major changes down somewhere! Ten treatments of 40 planned treatments into it:

Aside from the 90% improvement in dizziness (which is huge for me), I'm also noticing way less clumsiness. For the first time in ages, there are no bruises or cuts on my hands and arms now that I don't clumsily slam them into things like cabinets while putting away dishes. I'm also feeling sharper mentally, at least as much as the 2400 mg of gabapentin/neurotin a day will allow. I can kind of tell the difference in the gabapentin induced "stupids" versus the normal loss of cognitive abilities I feel I've experienced.

My pain relief is overall better, but it's been up and down for some reason. They say you can hit a wall where things get worse before they get better as nerves and vessels try to heal. So I should reserve comment on that one for further into the treatment. I've had migraines for years, something HBOT may help with. But I'm still having them at this point. And still no reduction of swelling, which is very bad in my case.

So there's the most objective report I can give right now. I hope this helps somebody. I continue to believe HBOT is a good, none-invasive alternative treatment for this disease. It may not work for everyone. There are probably different forms of and causes for CRPS. Perhaps this is the reason for so many different responses to different treatments. I have CRPS type 1, with no known inciting cause physically. It started abruptly with a swollen ankle the day I went to divorce court after my husband of 32 years left me. I'm now one year, ten months into it. I was diagnosed just over a year ago about nine months from the start of it.

Anyway, I feel hopeful!

Denise

Denise,

Thanks for the update, and so glad you're finding a noticeable improvement only 25% into the treatment schedule! Your body is doing some heavy detoxing so it would make sense that pain and other symptoms would be highly variable early on.

Love that you can feel your cognitive abilities improving, and love that you've read through everything on here you could find on HBOT. I did the same thing on this site, and every nook and cranny I could find on the internet. Based on what I found, HBOT is one of the first modalities I would recommend to anyone with more permanent symptoms. The difficulty then would be to educate yourself on the validity of different depths, durations, frequency of treatments, etc... but unfortunately the only way to really know anything is to research and experiment on yourself.:winky:

I do think that the effectiveness of HBOT, or any other modality, is directly proportional to how long the condition has existed, i.e. how long the immune system has been compromised. You've "only" been dealing with this for a little under 2 years, so a series of 40 dives wouldn't necessarily have the same impact on someone who has had the same symptoms for 10 years, as an example.

This might be a bit premature only 10 dives in, but a long time ago I found what appeared to be a highly reputable site that sells/leases hyperbaric chambers, with a wealth of information on appropriate protocols determined by much research and trial and error. From a cost perspective it was actually much less expensive to purchase a chamber and set your own schedule instead of going to treatment centers, (even if insurance paid for the treatment.) I'll try to hunt down the link again; maybe you'll find it helpful one day.

....How crazy is it that major changes in health (both positive and negative) are so often marked by major life events???

So happy for you - good for you.:):):)

I'm SO happy to hear of the improvements!!! Thank you for sharing! Please keep us informed of any updates! :grouphug: