Profile for User: Stingray_2014

Eric,

The doctor couldn’t really do left side treatments as well since he was doing 50 minutes of right side treatment. When we did do the left-side treatment, he cut down the right-side treatments length of time. Now he is doing two different areas of the right-side based on my symptoms. While TMS is approved only for the left-side, many doctors treat the right side with low frequency pulses as studies have shown it’s effective for depression. Basically, the doctor wanted to destimulate parts of my brain instead of stimulating them. TMS can still be successful even when not used on the left-side which is the point I guess and what the doctor was going for. I could ask him to get more left-side treatments I guess but when I asked him last time, he said the slow pulsed right side treatments are very effective against depression but also aid in easing anxiety. I know you didn’t mean it, but when I read your post, my stomach sank with anxiety and dread. Now I am wondering if I have lost my chance with TMS because I didn’t get enough left side treatments. I am the patient and I trust the doctor to make these decisions and now I will always be wondering if it could have worked. He stopped the left side treatments because of how obsessive my thoughts and ruminations are and chose to focus on the areas of the brain associated with them.

Thank you for the information on Ketamine. I guess I could try that but I am kind of scared of that and based on your posts, the effectiveness doesn’t seem to last. Since I have responded to medications in the past, I am wondering if I should just stick with them for now. I don’t really know. I will look into the tDCS as well.

Thanks

Hey Eric,

I agree with you that you have to be able to draw a line in the sand. It sounds like you have already done that and stand by it which is a good thing in my opinion. I am glad she was able to realize her behavior was irrational and express it to the doctor. I hope the increased dose of ketamine works.

I have already spoke to my doctor about getting an approval for more treatments. He did mention that sometimes he can get an approval for more treatments if there is an improvement. However, I haven’t shown any signs of improvement really. My anxiety and depression scores remain in the same spot for the most part. He also said, United Healthcare, which is my insurance carrier, tends not to approve the additional treatments. Plus, I am also in a unique situation. I haven’t been treated with the standard FDA protocol like your wife. He went off-label with me to treat my anxiety so I don’t really know what would have happened if we did the left-side treatment only. It gives me anxiety because now I don’t know if we’ll ever know if TMS will work for me. I had only about 6 left-side treatments or something like that. He then removed the left-side treatment and we now do the right-side and right-side orbital areas. That is supposedly where the “negative reward” network lies.

You are correct about the medication genetic testing. It was just kind of amusing to see Paxil on there in red after it helped me in the past. Your wife is correct that the guessing game of medications truly sucks. Now that TMS doesn’t seem to be working for me, I am anxious about going down the path again. Switching SSRI’s in the same class is bad enough, but now I don’t know what the doctors will want to try next. I have never been switched from an SSRI to a TCA for example. I don’t remember if the TCA class of antidepressants is even on the results of the test I received. Anyway, as bad as I am now, I know that switching medications can make things that much worse and I am truly scared. This is the first time a medication has pooped out on me, but it took a long time to find something that worked and now it’s failing. It’s such a terrible feeling for me. I don’t know how I am going to make it through it. I know it hasn’t happened yet, but I think about it constantly. Will I be able to work? Will I need to go to a hospital (I have never been in a hospital for mental health)? In the past, I have been the one to research medications and make suggestions to the doctors which is scary. They just don’t understand these medications. I am in such a bad spot and the TMS not working has really just smashed any hopes I had for it. I just want the treatments to be over at this point.

I am trying to keep my spirits up but yesterday and today have been brutal. I spend so much energy trying to hold the tears back so I can stay at work. I am scared as to what comes next for someone like me. I feel hopeless. I hope your wife’s dip ends soon and TMS begins to help her.

Hey Guys,

Just a quick update. I met with the TMS doctor last Wednesday and he changed my protocol again. He wants to focus totally on the right side because of my obsessive ruminations. He wants to try to calm that part of my brain. Anyway, we are doing the right-side treatment for 50 minutes with one pulse per second, and then my right orbital area above my eye for 33 minutes. These are also one pulse per second. It’s off the label treatment and I commend my doctor for trying, but I am not feeling any better. I think this is my last week of treatments everyday. I had a decent day on Friday and Sunday wasn’t so bad, but today sucks. I am just so sad and hopeless. I am trying to hold back the tears so I can stay at work. Today I am more hopeless than anxious it seems. My last drug combination did me well for over five years. I think such sad thoughts like if I had my reprieve so I could move, meet my current girlfriend, and make good memories before it was taken away from me. Now I tend to dwell on those good memories and feel like I will never be that person again. This is really brutal.

I hope you guys are hanging in there and doing better.

Eric,

As always, your response is very thoughtful and thought provoking. I do wish the science behind Lyme Disease and the co-infections was better understood so treatments could better serve the sufferers, but it is out of my control at this point and I know that. It is one of those snakes across the room but it’s also a very long snake as it has attached its ugly self to every part of my thought process. I felt so hopeless last night when I was researching LLMDs in my area as I read about so many people suffering even after being diagnosed. It was such a sinking feeling of dread that words cannot describe it well enough. I do plan to address it by making an appointment and getting tested along with a clinical exam, but you are right, there is nothing else I can do. It’s just the thought of possibly not getting any relief until I am treated (if I am infected) that is insidious and scary.

You are indeed correct about the fear of not being able to be helped. It is a very hopeless feeling. I am sure you appreciate it as you see the struggle your wife is going through. I honestly don’t know if the treatments are doing anything and that is a hard pill to swallow. We added a medication before my remapping and I haven’t gotten bad enough after that to completely break down and cry like a baby, but other than that, not much has changed. I had my 20th treatment today (but only 6th left-side treatment) so I was just hoping for more. You are analogy with getting knee surgery is a good one, but it’s hard to compare the knee to a brain. Yes, the knee may hurt after surgery but I could deal with that as it’s localized to the knee and surround tissue. The problem with the brain is that the brain is essentially…me. If it’s injured, it has the ability to distort all of my thoughts and emotions and make life unbearable. Every thought, feeling, and judgment had to go through the brain. I hope that makes sense. Intellectually, I do understand it is a process like any other procedure. The problem with me is that feelings and emotions can override my thought process rather easily as the entire world is distorted because of anxiety and dread.

I truly do not expect this to suddenly cure me of my ills. It would be nice to be hit with a bolt of happiness though. I know it’s a process and I accept that. I just wish there was at least an indication it is working. My better day could simply be due to the fact that I was having a better day. If I could tell that there was a gradual trend upwards, it would make my life easier. When the medications worked for me I would feel it. The SSRI would kick in and then the trend was upward and recognizable. I am also a bit of an odd case because my anxiety is really what ills me. I don’t even know if I am depressed but we are trying the treatment anyway. For me, the symptoms of anxiety and depression seemed to be blurred into one line. As I mentioned previously, I do answer low on the depression questionnaire but anxiety could easily cause those same answers. I try to give my doctor the clearest picture possible through my descriptions as well. I do understand that TMS won’t make me “happy”. I would be happy being my old self though for sure. I think in order to truly be myself again I would need to come off all medications, but that is another snake in this pit I don’t want to antagonize right now.

Right now I am still able to function and work which I am thankful for. When my anxiety gets really bad though, it’s debilitating. Up until on went on the new medication last week, I was going down the path of not being able to work because I would get so anxious and overwhelmed, that I would be constantly crying for relief. I feel spaced out and tired, but it’s better than being so bad I could just cry. I am still knocking on wood that I don’t start crying again. I have had the type of anxiety before which was brought on by certain events. It is different this time and part of the reason why I am scared. It just happens regardless of what I am doing. They aren’t panic attacks either but an overwhelming feeling of anxiety, dread, hopelessness, and despair. It’s just brutal. My cognition is also terrible which another reason why I was considering Lyme and its coinfections. My brain feels like Swiss cheese. My short-term memory isn’t there and my problem solving is horrible. Yes, it could be from the anxiety or medications, but I am truly worried I have some form of dementia. I was supposed to get some neuro-psychiatric testing done but I was too acute to do so. It is just really scary to be fully aware that your brain isn’t working correctly. Anyway, I do hope that you are right in that my mood will eventually pick up. I do have a daily pattern where I wake up early with anxiety, it builds up and up, and then starts to settle some in the evening. It makes work extremely difficult since so much is expected of me during the day.

I do agree that the marketing is exaggerated for TMS. I am reminded of that everyday as I sit in the waiting room of the TMS center, staring at the brochures for TMS bragging about the remission rate with pictures of smiling people. I look at that damn chart that has the timeline of when people start to feel better and wonder why the hell I am not following it at treatment 20. That creates anxiety as well. Part of this illness is constantly comparing myself to others who don’t struggle with this. I will admit that I something get angry at happy people, not because they are happy, but because I am not and they are just reminders. Yes, TMS and other treatments won’t change my personality and I think that’s a good thing. We are who we are and that is fine.

Has your wife ever tried cannabis? I don’t know what the laws are like back on Long Island these days but here in Florida, you can get a medical permit. Certain people I know swear by it for depression and anxiety. It has been mixed for me and I haven’t used it in a long while.

Thank you for the support as always

Eric,

I am sorry to hear about your family members who have contracted LD. If caught early, it is easily treatable and doesn’t lead to many long-term problems. I have been researching Lyme since about 1999 when my issues started. They started with an irregular heartbeat called atrial fibrillation which is pretty rare for a healthy 17 year old to get at the time. One possibility is Lyme but the testing was and has been extremely poor. There are specialized labs which insurance doesn’t cover. Anyway, CLD does cause significant anxiety and depression as you state, and you make a good point as to whether or not it’s a direct cause. However, I have had so many other strange symptoms over the years from brain fog to unexplained ringing in the ears and so many other strange symptoms as well. There are different strains of CLD as well; some are prone to cause the more recognizable symptoms such as joint pain and lethargy, while neuro strains tend to affect the CNS and cause psychiatric problems as well.

Lyme is actually one the fastest growing diseases in the United States unfortunately and the CDCs refusal to recognize CLD is finally boiling over. There are hundreds of thousands of newly infected people each year and the testing is still horrible, especially considering up to 50% of the people don’t show the tell-tale “bullseye” rash. I do wonder what makes you think it’s unlikely that I have Lyme. I am not saying that I do, but considering its prevalence and the fact that I grew up in an endemic area, it’s a possibility. Treatment for Lyme varies from person to person. Long term antibiotics are used but the outcome is not always good, especially in late stage Lyme which affects the CNS tissues. Also, finding a competent doctor who actually understands how complex Lyme is, is another challenge altogether, especially here in Florida. I did use the ILADS service to track down a doctor but I am trying to focus on one thing at a time. My concern is that I won’t be able to treat the anxiety/depression I am having if Lyme is really the culprit until the Lyme is dealt with. It’s very frustrating and scary to say the least. Lyme is also one of the fastest growing causes of disability claims as well at this point.

Anyway, I did have a better day yesterday. During yesterday’s treatment, which was my 3rd bilateral and only the 3rd time getting the left side of my head treated, I felt a strange rush over my body. It was like I could feel something was unleashed in my head. It sounds strange, but it’s similar to the feeling I get when initializing SSRI treatment. After yesterday’s treatment, my anxiety seemed to subside quite a bit and I felt more hopeful. I was able to think of the future without as much dread. Unfortunately, it didn’t last long and I don’t feel well again today. The anxiety was back big time. This is what’s so hard about treatment – It’s hard to build up hope when it gets crushed almost immediately. Also, I feel like my case is more unique because of my anxiety. I honestly feel like if my anxiety was controlled, I would feel a lot better. It’s hard for me to tell if I am depressed. When I cry, it’s because I am so overwhelmed with anxiety that I feel utterly hopeless. This makes me wonder if the left side treatment will even help me since it’s primarily used for depression. I do answer all of the questions on the depression questionnaire, but I feel like anxiety can cause the same results as depression. I hope I am explaining this well. Also, I was responding to medications and stable on them until fairly recently but it took a while to get there. This is the first time I had SSRI poop-out or whatever it’s called. When the SSRIs work, they control my anxiety pretty well. I don’t know if TMS can do the same. I just wonder if I am getting the right treatment is all. I know I go around in circles with my thoughts but that is what my brain does currently. Tomorrow will be treatment 19 so I was hoping to feel more by now. I am just really scared that this isn’t working and I don’t know what to do next. Sorry for rambling. It’s just very disheartening to have a somewhat good day and then get thrown back down, not knowing if TMS is even doing anything.

Thank you for your support, Eric.

Eric99,

I appreciate the response and support and I hope TMS works for your wife. The hopeless thoughts you mention are constantly going through my head. I have only had 16 treatments including today and I am already looking at what’s next as far as medications or something that could help me. It’s just really hard to be trapped in this train of thought for 24 hours a day. Plus, I may or may not have Lyme disease which is a huge wrench thrown into things since it’s so hard to test for and it would be late stage for me by now. Instead of just focusing on getting the TMS done and being hopeful that it will work, my mind goes to negative places and it’s so frustrating and disheartening. I truly want to believe that this will somehow work for me and the others on the forum. I am a bit disheartened that I haven’t felt any better thus far and I am wondering if my treatment protocol will work. I know 16 treatments isn’t a whole lot and I have only been treated on the right side instead of left, but I was hoping for something.

I only started the standard left-side treatments on Friday so I have only had two of them. My doctor’s approach was to start on the right side to treat my anxiety with low frequency pulses since my anxiety is so bad. Now we are coming back around to the left side to treat the depression I guess with bilateral treatments. So where does my brain and thought process go? The first thoughts were that this wouldn’t work because I won’t get enough left-side treatments now since we didn’t do them from the beginning. I know I am my own worst enemy but my brain just won’t stop going there.

Anyway, I am rooting for your wife. I hope she continues to show a gradual improvement.

I appreciate the support. I have been holding in tears for hours now and will likely release them when I get in the car to go home. My legs are like burning with anxiety and crying is my only release at the moment.

I am approved for medical cannabis but that is hit or miss and I am usually too scared to try it. I just want to feel better.

Hey, patjrvj,

Thank you for all of the useful information and sharing your journey. I wish this was a forum I never had to visit or concern myself with, but these are the dice we have been dealt I guess.

The last SSRI I was on lasted about 5 years so this is my first poop-out so-to-speak and I am devastated because of it. How quickly did you respond to TMS? I have been a bit up and down. I am getting treated for anxiety at the moment on my right-side but I meet with the doctor this week for a discussion and remapping and we may do the standard left-side treatment as well. I had a better day on Friday, cried on Saturday but then mellowed out, and then had a decent day on Sunday. However, now that Monday has come around, I am not doing so well. I had my 11th treatment this morning and I am feeling bad again. The technician wants me to focus on the partial relief I have been getting, even if it’s only temporary in the hopes it will become more permanent. It’s easier said than done of course.

I have had talk therapy before but never CBT. They are recommending that I do CBT as well but it’s hard to make time at the moment since I still work and now I have these daily TMS treatments at 9:00 AM each morning. I would like to get to a better place with TMS and then really devote time to CBT.

I haven’t been hospitalized but it’s one of my fears that I will lose control so bad that I will have to go to one. One of the fears of a hospital is being put on real heavy duty medications and being a zombie. I am on a small dose of Seroquel right now which I don’t like and I don’t want anymore. Although the SSRIs have side-effects, I was totally willing to live with them since they helped me feel pretty normal. In fact I wish my SSRI was still working so I didn’t have to be going through all of this now.

Anyway, I will have to look into EMDR as well as I haven’t heard of it. I am sorry to hear about your childhood and how traumatic it is. My childhood was okay I suppose. I did have a traumatic health scare in which this anxiety seemed to start when I was 17. I have been in a state of depersonalization since then which the doctors don’t understand. I don’t know if you suffer from that as well.

I am glad you had an improvement after 6 treatments. It kind of scars me that I thought I felt some improvement, but now it’s mostly gone and I have had my 11th treatment today. I know we have different treatment protocols. The doctors seemed to think that anxiety responds more quickly than depression, especially since I am getting right-side treatments, but I don’t know if it’s working or not. I am just so fearful that TMS won’t give me any relief and I won’t know what to do besides start the medication go-around again with a different class. I meet with my doctor this week to discuss my progress and then a remapping as well. Maybe we will do bilateral treatments as well.

I am glad to hear it is helping you.