LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » First HBOT experience....not a good one! :(

 - UBBFriend: Email this page to someone!    
Author Topic: First HBOT experience....not a good one! :(
triathletelymie
LymeNet Contributor
Member # 26456

Icon 1 posted      Profile for triathletelymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well, I took the plunge (no pun intended! [lol] ) and got a script from my LLMD for 40 dives. Although I was/am a bit skeptical about it's effectiveness, I had done my research and found numerous claims of improvements for Lyme patients. So, I decided to try it! Not much to lose (outside of more money, of course!) and, quite frankly, after four years of illness, looking forward, yet again, to any possibility of improvement!

Well, after my first dive today, I'm not so sure that I will be able to continue! [Frown] First of all, I am mildly claustrophobic which, when in a hyperbaric chamber, is not the best environment!

Then, in beginning the dive, my left ear did not cooperate. There was pain and the nurse then slowed down the descent which appeared to help. Now, though, 14 HOURS LATER, I am barely able to hear out of my left ear and the pain is still there, now so intense that I'm unable to sleep!

And, finally, immediately after the dive, I felt awful! Brain fog WAY worse, increased muscle twitching, and just generally sick feeling. I ended up coming home and crashing on the couch, barely able to function, all-the-while hardly able to hear out of my left ear and laden with pain in it!

A few questions:

'Anyone experience these issues? If so, were you able to work through them and continue? If so, what about the ear pain? Can you get permanent damage from it? How long before the pain abated?

I am to return tomorrow (I am to do four weeks in a row...5 days in a row each week, then take a month off, then do another four weeks!), but not so sure that that is wise!

Thoughts? Anyone?

~tri

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
kgg
Frequent Contributor (1K+ posts)
Member # 5867

Icon 1 posted      Profile for kgg   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would not do another dive until the ear is better. Ask. But perhaps a decongestant prior to a dive is in order?

I don't think the need for a nap afterwards is unusual.

Posts: 1572 | From Maine | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
mbdq
LymeNet Contributor
Member # 26277

Icon 1 posted      Profile for mbdq     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have had ear issues as well, doing the mild HBOT. I gave myself barotrauma by going in the chamber while I was congested and not being able to easily clear my ears. I am doing better now, although I can still hear crackling in my eustacian tubes when I yawn and swallow.

The barotrauma absolutely terrified me because I feel like the mHBOT is really causing me to herx and it has helped my debilitating migraines. I want to be able to continue treatment.

An ENT confirmed the barotrauma and I had to take a break for a few weeks. I then worked back up to full pressure slowly.

I use the following to help:
1) Go up and down as slowly as possible so you can concentrate on clearing your ears and "staying with and ahead" of the pressure changes. Basically, keep clearing your ears constantly- which for me is leaning my head back and yawning, moving my jaw from side to side

2) If an ear is not clearing easily, go back up and get to a depth where the ears are clearing again, then you can try descending again

3) I use a device that has been helpful called an ear popper if I feel I am having trouble clearing. It blows air up your nose while you swallow, popping the ears. You can purchase without a prescription via Amazon. $250 but worth it for me and my ear issues. Some HBOT places have them for patients to use.

4) Do not put a pillow behind your head in descent and ascent- I find it is easier to clear the ears with the head tilted back and flat on the mattress.

5) Out of the chamber practice the valsalva maneuver or other ear clearing practices to train your ears to clear more easily. This is still tough for me, despite being able to clear in the chamber. I guess my anatomy doesn't like it.

6) If necessary, use decongestants to help you. Some HBOT centers have people use Afrin and/or Mucinex. For me, this is not ideal as they can cause rebound mucous and dependence.

7) try to make sure you are as decongested as possible before going in. Get your lymph moving via a short brisk walk, gently rebounding, bouncing on an exercise ball etc. I also use a neti pot to try and keep the sinuses clear. I am prone to stuffiness and have enlarged adenoids.

Overall, do not dive if you have barotrauma. You need to heal first then try again. I'm sorry. This is so frustrating!!

Posts: 233 | From Hudson Valley | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
sammy
Frequent Contributor (5K+ posts)
Member # 13952

Icon 1 posted      Profile for sammy     Send New Private Message       Edit/Delete Post   Reply With Quote 
Chewing gum helps to pop your ears, that's what I used. And yes, you do herx from HBOT!
Posts: 5237 | From here | Registered: Nov 2007  |  IP: Logged | Report this post to a Moderator
JCarlhelp
LymeNet Contributor
Member # 15957

Icon 1 posted      Profile for JCarlhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
Also earplanes, the little plugs for airplanes
Posts: 366 | From Kalamazoo, Michigan | Registered: Jun 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby only tried hyperbaric once. It was before he had been diagnosed and before any treatment -- I think it was about 8 months or so after he first got sick with tickborne illnesses.

They had to stop the treatment as it made his tremors worse and he started having dry heaves while in the chamber. Fortunately the doc did not charge him for the dive since it was stopped less than halfway thru.

The nurses told us that only lyme patients had immediate reactions to HBOT like he did. But it was another year before he was diagnosed and then another year before any antibiotics.

I would not do another dive until you talk to someone about the ear issues. As with all lyme treatments -- you need to fully understand any risks involved and not rush the treatments.

I hope you can find a way to continue the treatments as it sounds like they may be of benefit to you. But I am almost positive that permanent hearing loss can occur in some patients -- surely they had you sign some sort of consent form that explained the risks?

Bea Seibert

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
"Hearing loss . . . severe pain during dive and still a day later . . . ."


I would NOT do another dive until your ear has been pain free for at least a month and all other ear symptoms are calmer. Even then . . .

With the effect this had on your ears, it could be very dangerous, and damaging to you permanently.

I researched HBOT for months and finally determined that my ears simply would not allow it. ANyone with the experience you had with your ears should not do this again until you get expert advice from a LL ear specialist, best if a LL neurotologist -- and ASAP.

The damage done by the dive might be able to be mitigated but it may required some specialized help. Ask your LLMD, first, of course.

I cannot believe any HBOT operator would suggest you return the next day after such an experience. It's negligent.

Some ears just can't do this. Again, it can cause permanent damage (hearing loss, chronic pain, balance issues, vision issues from the ears, nausea) to push it. The inner ear system is very delicate.

I hope you can talk with your LLMD and then figure out the best course for some healing before making an assessment if this can be tried again. It may work later on.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
Honored Contributor (25K+ posts)
Member # 12673

Icon 1 posted      Profile for Keebler     Send New Private Message       Edit/Delete Post   Reply With Quote 
-
If ANY Rx you are taking now is on the "Ototoxic Drug" list here, I would stop it.

Liver support is vital, too, to help the ears. Still, you need professional advice ASAP so that your hearing may be restored. I'm sorry if I sound "urgent" but it is. I'm so sorry that you are dealing with this. I think the HBOT clinic staff is undereducated in the matter of EARS.

Scroll down a bit to find the "ototoxic drug" posts:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Stubman1
Member
Member # 41135

Icon 1 posted      Profile for Stubman1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Being a scuba diver I would always take sudafed before dives.. Even with that on one dive I busted all the blood vessels in my ear on a dive that I aborted rather quickly after feeliing pressure.. Based on the symptoms you are describing I would go to an ear specialist.. They can test your hearing and your ability to equalize your ears and determine if you have damaged your ear drum etc..( this is what I did after my ear incident) ...
Posts: 30 | From Virginia | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831

Icon 1 posted      Profile for oxygenbabe     Send New Private Message       Edit/Delete Post   Reply With Quote 
Okay...
Let ear totally recover. I'd say a month.
Go into a multichamber, much less claustrophobia and easier to equalize ears sitting up.
I swallow water to pop the ears.
Use earplanes, which they use on planes for pressure changes.
Use a decongestant like afrin ahead of time and don't go in if you are congested with allergies or a cold.
Have the tech bring you up very very slowly, and make sure ears are popping and there is no discomfort.
Go to 1.75 and see how you do. Though the biggest pressure change is right at the beginning. There's no proof 2.4 is what's needed anyway. It's all based on one small study 30 years ago or something.

Feeling worse and foggy is a good sign, a herx.

Posts: 2276 | From united states | Registered: Jun 2004  |  IP: Logged | Report this post to a Moderator
desertwind
Frequent Contributor (1K+ posts)
Member # 25256

Icon 1 posted      Profile for desertwind     Send New Private Message       Edit/Delete Post   Reply With Quote 
Geez.. I would be careful and if your ear does not start feeling better then go to an ear specialist. You want to make sure you did not bust anything!
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
wrotek
LymeNet Contributor
Member # 5354

Icon 1 posted      Profile for wrotek     Send New Private Message       Edit/Delete Post   Reply With Quote 
I think what You are experiencing is classic herx, you should be content cause it is consistent with treatment of lyme.

You should slow down, make hbot with more time between treatments, in order to control die off and detox. Too much herx can hurt You.

Posts: 636 | From Wroclaw, Poland | Registered: Mar 2004  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
Triatheletelyme...

I'm concerned about your situation; particularly the degree of herx you experienced after one dive (I find this even more concerning than your ears).

Did you decide to do HBOT vs mHBOT?

What pressure did they treat you at (ATA)?

Like I mentioned on your other thread, "more" is not always "better" (i.e., higher pressure), with certain conditions...and I would hate for you to continue treating at a pressure that is too high, or give up on hyperbaric altogether because you haven't been treated optimally.

Unfortunately, treating at too high of pressure has turned a lot of people off to hyperbaric. The power of hyperbaric is often underestimated, and I try to emphasize this point as much as I can with people, but this aspect is often overlooked or ignored.

Here's an article by Dr Paul Harch (who has been researching hyperbaric for over 20 years) that illustrates this point:

http://www.netnet.net/mums/Harch2.htm

Many clinics are still using older protocols that are outdated and don't take the current research into consideration, with unfortunate consequences...

Posts: 1658 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
triathletelymie
LymeNet Contributor
Member # 26456

Icon 1 posted      Profile for triathletelymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thank you everyone!

Here's an update:

Well, I opted to continue, albeit after my first "not-so-fun" experience.

After the first dive, I had four more that week, then the weekend off, and now midway through my second week. So, a total of 8 dives so far under my belt...so 20% completed! [Smile]

When I returned the second day, I told them about my ear issues that occurred after the first day. They took me down and up MUCH slower than they did the first day and all appears to be well with my ears. The weekend "off" helped, too, I think.

And...no more herxes after day 1...if a herx was, in fact, what it even was...???

Phoiph - My LLMD perscribed 2.4 so they slowly worked up to that and I am at that pressure daily now.

All seems well. I still am not a fan, really, though, because I am mildly claustrophobic, but I am dealing with it. Movies and compassionate staff definitely helps! [Smile]

No changes so far though, which is kind of discouraging, as this seems to be somewhat of a last resort effort for me, as I am now 3.5 years into treating this horrid disease! But, I do realize that it, like all of the other treatments, takes time. I am hopeful for improvement, though! I am all neuro and some days it is just VERY difficult, as I realize that you all know!

It is a trek every day though...45" one way to the HBOT center, which is taxing in itself. But, quite honestly, I am a little nervous about purchasing a unit for myself and doing the treatments myself. I am not very good with that kind of stuff. Nervous about it, I guess. It took me near the end of my second bout of my PICC line experiences before I would even infuse my own meds. LOL!

Anyway...any other thoughts?

~tri

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
TNT
Frequent Contributor (1K+ posts)
Member # 42349

Icon 1 posted      Profile for TNT     Send New Private Message       Edit/Delete Post   Reply With Quote 
triathlete... that's great that you can continue. If you are not experiencing any other negative effects, and your ears are taking it fine now, give it a go! I am doing low pressure at home and wonder what it is stirring up. But I am continuing. Hope I will see improvement. (15 days in now)
Posts: 1308 | From Eastern USA | Registered: Oct 2013  |  IP: Logged | Report this post to a Moderator
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238

Icon 1 posted      Profile for Phoiph     Send New Private Message       Edit/Delete Post   Reply With Quote 
More support for the use of lower pressures (i.e., 1.5 ATA or less, considered "mild" hyperbaric) by an LLMD currently using hyperbaric with his patients:

http://lymemd.blogspot.com/2013_11_01_archive.html?m=0

Posts: 1658 | From Earth | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
My husband damaged his ears diving with an ear infection. Should have known better. I'm so claustrophobic I. Could never do these things.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.